So… What Happened?!?

JJ needs a heart transplant. That’s what happened.

Instead of massive text threads, and emails, I thought I would start this blog so that I could keep everyone updated with what’s going on.

NOTE: There are links if you scroll down, or you can swipe left or right to navigate through the blog.

Basically, I am in the hospital, I need a new heart, and I am getting prepped and ready to try to stay in line for one.

Look at that! This entire blog is now obsolete. If you’d like more details, by all means swipe and read away.

The first page of 10 entries are copies of texts that I sent out to various groups (more on this on that actual page). The pages following that have new entries on this site only.

UPDATE: As I didn’t know how long I would be posting, I’ve decided to start a new page for September and the subsequent months (if I end up posting that long). The direct link to that page is below so if you are following this blog, you can link directly to the current month. You can also access pages by swiping left or right, or by the links below.

A note about Comments:
I don’t have comments available on this blog because I don’t have the capacity to moderate them. So, if you’d like to send me any thoughts, feel free to text or email me. I would love it!

Here’s How It All Started. (the group texts)

These first 10 updates were all sent out by group texts when the feces started hitting the fan.

Please understand, this was done at a time of duress and I was just thinking off the cuff between times I had access to my phone in a whirlwind. I just very quickly grabbed contacts and names to put in family, friends, and coworkers categories. If you weren’t part of these original text, I didn’t purposely exclude you, I was probably just out of breath.

So basically, to the people who MADE the list, you’re nothing really special.

UPDATE 1: Thursday, July 29, 11:44 AM
Hello all,
I just wanted to let you know that as of 4 am this morning I was put in ICU. I had some panicky shortness of breath and my BP went extremely low.
They gave me a catheter (ouch!) and meds to start fluid drainage. Apparently there is a lot of fluid in my lungs. I’m on other fun stuff including dopamine!
They have not given me a discharge date estimate yet, as the Dr said literally, “You’re a mess.” They thought it was my heart because my troponin levels were so elevated to the level of someone who has had a heart attack, but all tests show a healthy heart and those levels could be caused by other things.
They are also checking my kidneys, liver, and fluidy lungs.
Love you guys so much,
-JJ
UPDATE 2: Thursday, July 29, 8:00 PM
Update: I will be here in the ICU for at least until Monday. I spoke with the cardiologist just now and she said my ejection fraction is only 25%. We will try to fix that as much as possible. She believes that I have had a heart attack before without knowing it.
UPDATE 3: Friday, July 30, 1:21 PM
Update: I just spoke with my GP Dr. Vartany and my nephrologist Dr. Suh. I am on the schedule to be transferred from here to Kaiser Sunset on Monday for a cardiac catheter procedure. If all goes well I will be transferred back to this ICU. If they want to observe me longer they will keep me at Kaiser sunset. I'll keep you posted on what goes on Monday. From now until Monday, they are going to monitor me and try to get more fluid out of my system. And make sure my kidneys are healthy for the procedure. That's it for now any more news I'll pass on to you. I love all of you and thank you for all of your love and support!
UPDATE 4: Sunday, August 1, 6:00 AM
Update: hello everyone, sorry I’ve been silent for a while. I have been trying to get more sleep and concentrate on getting rid of all the fluids in my body. We’ve been having an issue with it so the doctor started me on a medication called Lasix. This should help me expel my fluids. And it’s working! However slowly. To the point, where they may postpone tomorrow’s cardiac catheter procedure, although my cardiologist Dr. Sarkis says we’re keeping my appointment slot.
If I still have severe Edema, they will postpone the procedure until later in the week. They are keeping an eye on everything to make sure the process for the angiogram and possible angioplasty are safely done. I’ll keep everyone updated on the procedure and when it happens.
Good news though, my kidney functions are almost back to normal. Which makes me super glad AND I have had decent blood sugar levels throughout this entire time including when I first checked in.
Thank you everyone, love you all and I’ll keep you updated as much as possible.As far as how I’m feeling I’m feeling very positive that things are headed in the right direction and although I still feel weak, a my spirits are high and I am able to do more than when I came in before getting short of breath.
Thanks again! Love you all!
UPDATE 5: Tuesday, August 3, 10:02 AM
Update: NOTE this entire update is about pee. If your squeamish, TLDR: I was exhausted and in pain a lot yesterday but better with more energy today. Squeamish can stop here.
Yesterday was rough! So, this head nurse Elena decides to go over the doctors head and order my Foley catheter (if you don’t know, Google. It’s a bit TMI) to be removed. Even though, the cardiologist said to leave it in because we need an accurate measurement of the fluid I am getting rid of. This was due to “policy” to prevent infection. In its place, she insists on using a technique called, “in and out” where I have to call a nurse to insert a catheter EVERY TIME I HAVE TO GO which has pretty much been every hour on the hour. Sometimes they’re “surprise” urges that wake me up.
Yeah, no. Nurses are busy enough and I’m not dealing with that many catheters. Nice option Elena to reduce risk of infection. Sticking a catheter in and out every hour in a hospital we’re all rooms are full and most of them are full of Covid quarantined patients? Stupid.
I am shocked, because it took a while to get it in there the first time because of all the swelling which I still have. So I made it clear that once it’s out it’s out.
So they remove it, which was very painful, and one hour later the doctor issues in order to put it back in. I refuse at first, because at that moment, there’s a lot of trauma going on down there. The nurses talked me into it and an hour after removing it, they start the procedure to put a new one in.
It does not go well. I am in a lot of pain. Two tries and it doesn’t go well. So they get a smaller gauge tubing. First try doesn’t work. Second try seems like it works, but when I expel fluid, we find it didn’t work. So that’s FOUR tries in a row. I’m bleeding, in tears, and shaking. The nurses say that if the doctor wants a Foley catheter, then he’ll have to be the one to put it in. Three nurses have already tried including the head nurse.
The only other option is a plastic urinal which now, according to this patient is the ONLY option. I’ve been using the plastic urinal to great success. I’ve managed to collect every drop, I’ve dealt with knowing it was coming, being awakened by a sudden urge, and surprise urges. All to great success.
So hopefully I can convince the doctor (cardiologist), to forego a Foley Catheter. Correction: now I can EXPLAIN to the cardiologists why I am NOT getting another Foley catheter.
Then, I’ll go and slap Elena in the face.
UPDATE 6: Tuesday, August 3, 11:45 AM
Pee update: no Foley catheter! Just spoke with the doctor and he is happy with the way things are and noticed my energy. So yay! No more tears! Take it away Barbara.
UPDATE 7: Wednesday, August 4, 12:34 PM
Update: Hello all! I’m walking around, sitting in a chair, but they’re giving me a walker because I’m dizzy from the medication. I have mastered peeing in a plastic urinal. I’m ready for a long ass road trip.
Note about visitors: Visiting is a challenge for me. I have to do my pee ritual literally every hour and there is sometimes no warning. For the sake of my dignity, I would love it if, instead of me stressing about visits, we gathered after I recover and celebrated and visited then. I would have a much better time and the visit would mean so much more to me, because I know it’s harder to prioritize social things like that than when they’re based on illness. It would make me feel super special!!!
Things are going well, and the angiogram and possible angioplasty are set for around 11 AM Friday. Stacy is taking care of me like a brother and I couldn’t be more grateful. More updates to come!
I LOVE EACH AND EVERY ONE OF YOU! ❤️❤️❤️
UPDATE 8: Thursday, August 5, 6:28 PM
Update: Hi everyone! Well, tomorrow is the big day. 11 AM, Pacific standard time! I meet Irish messenger, Angie O’Gram! I’m not so nervous about the procedure, or what they’ll find, but I’m worried about the recovery afterward.
It may involve a Foley catheter. Unless we can figure out an external catheter which one of the doctors recommended. I am going to ask if they have to do it, can they do it while I’m under the local. I am making sure that everyone knows what happened, and that the incidents are in their mind when they’re making this decision. I’m a little stressed. I’m imagining very strange vases of flowers through these times.
I will update everyone tomorrow whether I’m staying at Kaiser LAMC (Where Myra recovered from her heart surgery yeeeeeaaaaars ago!) OR if I’m transferred back here to Kaiser Panorama City same day.
Of course my much needed nap delayed dinner. It’s late. I’m starving.
They have finally reduced my meds as I have lost about 27 lbs of fluid. AND there’s still more. I’ll be continuing the therapy even after I go home. Everything is dependent on the results of what they find tomorrow. I’ll update everyone.
Dinner is still not here…
Miss and love you all! ❤️
UPDATE 9: Saturday, August 7, 6:50 AM
Update: well the procedure went well in that they found out what they needed to find out. But that’s about where the good news stops. I have severe blockage in all of my major arteries. My EF has been 15 to 20% this entire time. So since they can’t really work on any of the arteries., They recommend a heart transplant. So, I’m consulting with that doctor probably tomorrow. (They said I would see him yesterday, but…) I will keep you guys updated with what’s going on as I find out news.
As far as the actual procedure, I still have a catheter in me. Apparently they found out what they needed to find out, and then left. So, when I was asked can you lie on your back flat for a few hours? And I said yes, it actually meant can you possibly stay on your back all night and all day and the next day. (I just found out that there is no procedure tomorrow.) Here’s the thing, I can lie flat on my back for a few hours. After that, I start coughing because of the fluid that’s still in my lungs. Every time I cough my monitor alarms in celebration. Here’s to a bunch of fiestas.
Obviously, this was a lot to go through and take in yesterday. I do know that right now they want to keep me in the hospital until the transplant since my heart is so weak, and that the transplant will occur at Cedars Sinai where Kaiser sends all its transplants. More later as I know it.
I know a lot of you have been worried, but know that Stacy has been my savior during all this, all of the nurses are great, (some of them even listen to you!), and the doctors are very transparent and talking with dad, another saint on my team.
I wanted to thank you guys, the rest of my team. I have felt every ounce of your love, your support, your humor, and your kindness. The fact that anyone wants to come and visit me in a Covid infested hospital, or even WANT updates on this journey is so touching to me. I. Love. You. All!
Oh PS, you know how I didn’t get dinner the night before? Well I didn’t get breakfast, lunch, or dinner yesterday. They gave me another dry sandwich after the procedure which I didn’t finish. Dinner time I was switching rooms when the kitchen closed and, “I can offer you a sandwich?” made my heart leave my chest and look for its own transplant. “No.” I can’t take another dry sandwich. It’ll just make me not eat food that’s right in front of me when I’m starving. I’ve never been this hungry in my life. The combination of the news and the food deprivation makes me feel like a prisoner in foreign lands.
Sorry this update is a somber one. Ups and downs y’know. Love y’all.
UPDATE 10: Monday, August 9, 9:10 AM
Update: sorry to lay a somber update like that for you guys and then not give another one the next day! Everything is great so far. Yesterday I was insanely week and tired but it was just an electrolyte shift. Today actually, Last night and today, I’ve been feeling much better.
My spirits are pretty much up as well. I am really grateful for every thing that has been happening around this situation. All of my friends supporting me all of my family sending their love, as just having a possible second chance are all things I consider to be super lucky.
OK, I just wanted to let everyone know that I was OK. See you next update. And always remember I love each and everyone of you.
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AUGUST 2021 POSTS

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Anxious Night, Achy Morning, Lovely Day. Tuesday, August 31, 7:22 PM
Last night was spent sitting in a chair, waiting to go to the bathroom to see if I was ready for the colonoscopy today. I was up all night just waiting, pooping, and repeating. Up ALL night.
The anxiety of worry gave me a nice tension headache by about midnight, so I eventually added “massaging my forehead” to the repeating loop. At about 7 AM, they decided I had to drink another liter of Miralax. Like power drink it all in one go. In the morning. On an empty stomach (I’m NPO at this point).
8 AM, the scheduled time comes. Nothing. 8:15 AM, my nurse comes in and says the procedures pushed back to 1 PM. NPO until 1:00 which means no lunch either.
11:55 AM, Procedure is now! I’m whisked away to the GI lab, and who is the first person I see and talk to in the lab? AN ANESTHESIOLOGIST!!! I have my own anesthesiologist for the procedure. I’m given a light version of sedation (like they said they would do at Kaiser), and it made ALL the difference. All went smoothly, just felt a little bit of pressure, and I was back to the room and eating LUNCH by 2 PM.
So all turned out ok on the return trip through the tunnel. I was pleasantly surprised, and I’ve just come to realize that KAISER’S GI TEAM SUCKS ASS! Why would they make me go through all that?
Stacy came by for a visit and to help me with some paperwork. In the end it turned out to be a great afternoon/evening.
I love each and every one of you!
A Return to the Tunnel. Monday, August 30, 8:30 PM
I’m so frustrated.
Ugh.
Here’s the update. ANOTHER COLONOSCOPY. Fuck. They want to look at the small ulcerations seen in my last procedure (probably caused by my heart failure), and see if they’re causing the slight elevations in temperature that HAVE NOT BEEN HAPPENING since they gave me an antibiotic.
So they SAY that I will get sedation, but so did the last team until the very last minute. I don’t trust anyone’s word.
I didn’t walk today because I was pretty upset.
My day was going so great with a visit with Mom. We were laughing, having a nice visit, then at about 4:00 PM one of the GI doctors comes in and gives me the news. I tell her about the last colonoscopy, and she looks briefly horrified, then says, “Oh no, you’ll have sedation. Don’t worry.”
Of course the first thing I ask about is dinner. No dinner, just clear liquids tonight. Then at midnight, N-fucking-PO. The three most hated letters in my world.
Then of course, every med student in the world has to come in an tell me about the update. Separately.
“Did you hear you’re getting a colonoscopy?”
“Did you hear you’re getting a colonoscopy?”
“Did you hear you’re getting a colonoscopy?”
“Did you hear you’re getting a colonoscopy?”
YES I FUCKING HEARD, GET OUT OF MY FACE!
The rumor is they’ll try and squeeze me in in the morning. Last time I heard a GI team say that, I didn’t have the procedure until 2 and a half days later. No food.
I’m really scared right now. The last one was so painful and so horrible, I can’t forget it. I also can’t imagine going through it again. I guess soon I won’t HAVE to imagine it.
I’ve just finished 2 liters of Miralax, and taken a diuretic in pill form. My bedside commode is prepped and ready beside me. 3 urinal bottles are within reach. I’m ready for the inevitable mass exodus. Ready to let my poopies go.
I’m so not looking forward to tomorrow. I’m nervous, anxious, and trying to relax by watching comedies on TV. I’m also sleepy. I don’t want to fall asleep and suddenly wake up in another “sea of me” like I did at Kaiser.
I may be distracted right now, but rest assured, I love each and every one of you.
A Day of Rest. Sunday, August 29, 11:10 PM
Today was a nice, restful Sunday. I’ve been able to continue my 2 laps around the ward each day, and other than that, I stayed in bed.
They are still trying to figure out the mystery elevated temps. I’ll be talking with the infectious disease doctors tomorrow morning, so I’ll bring things up with them. Until this is all resolved, I believe I’ll be on the internal hold here in the hospital, but better safe than sorry.
No other stories or tales from today. It’s all been quiet and uneventful, just like the doctors want it to be.
I love each and every one of you!
Food and Fevers. Saturday, August 28, 10:47 PM
It was a very calm day today. The talk of the ward in the morning was how late dinner was last night. It finally came at 9:30 PM! There was no explanation at all. Apparently, the kitchen forgot the entire Heart Failure Ward. One of our nurses saw one of the food and nutrition people taking an empty tray away, and she said, “None of our patients have had dinner yet.” They were surprised, and it took them two and a half hours to make the dinners for our ward. Of course, everything was wrong on my tray. When they’re NOT rushed there’s always something wrong on my tray. But finally, I got to eat. It messed up my meds schedule and such, so I got weird sleep, but at least I didn’t starve through the night.
All meals today were on time and still wrong, but close. I can’t wait to cook for myself and make my own meal plans. The kitchen here taught me a lot about portion sizes and what actually fills me up. I hope to eventually stop finishing every single crumb “just because it’s there”, and stopping when I’m full, but they’ve conditioned me so much that my next meal may not come, that I tend to eat like it’s the last food I’m going to see for a long while.
I’m still getting those strange little fevers with no explanation. They’re mostly in my swan. If you check my temp through my swan, it’s a little elevated. If you check it on my forehead, it’s pretty normal. I’m still not feeling any fever symptoms, and I wouldn’t even know I was having them had they not told me.
They took a LOT of blood tonight to start more cultures and make sure there is no infection. For safety, they also put me on an antibiotic to be safe.
Other than that, today was pretty smooth and calm. I miss you guys. I miss the outside world. I miss driving. I miss going out. All those things will come back to me eventually, and I promise not to take them for granted!
I love each and every one of you.
Fevers, Frolics, and Famine. Friday, August 27, 8:41 PM
So far all the updates from all the doctors have the same overlying good message: I’m healthy, my stats are good, and to keep it all up as we wait.
There are a few things that are standouts for today though. One of the strange things going on, is that I get short, slight fevers at night. Like short as in a few minutes. I don’t know I get them. No chills, no aches, no sweats, nothing. I would never have known about them had they not told me. SO, to make sure there are no infections, they are taking all the appropriate steps. Including putting me on an internal hold (which means they’re not taking me off the list, but Cedars will put a hold on my transplant until it’s resolved). The hold should only last through the weekend.
On a happier note, I got to do another 2 laps around the ward. It was as energizing as it usually is. I think it’s one of my favorite parts of the day.
Now it’s time for the whine of the day. FOOD SERVICE IN HOSPITALS SUCKS ASS. Dinner is supposed to be at 5:30. We get our trays usually an hour after that. It is now almost 9:00 PM, and no one in our ward has received their meals. Of course, the rest of the hospital has been fed, but they forgot AN ENTIRE WARD. Oh, and they were SURPRISED. I’m not even sure if we’ll get fed now since it’s already fucked with everyone’s meds and scheduled procedures.
Ending on a good note. I love each and every one of you.
A Best Friend and 2 Laps. Thursday, August 26, 7:45 PM
This afternoon I had a great visit with Stacy. She brought some Amazon stuff I ordered, and a few cards from you guys. Thank you so much for thinking of me. It really helps to have those colorful envelopes and cards in my bag to look through every now and then. You’re spoiling me with your love and support!
At around 2pm, I got to walk another 2 laps around the ward. It was very invigorating, and when I got back to the room, I was very content yet excited about moving around again. I may try for three laps tomorrow!
Doctor’s update is pretty much just to stay healthy and wait. All is good so far, and I’m just patiently waiting.
Thanks everyone, I love each and every one of you.
Amazing Discoveries: Disposable Undies. Wednesday, August 25, 7:54 PM
Today, actually yesterday, I discovered that the hospital has DISPOSABLE UNDERWEAR! It helps so much with my bare-butt on the chuck issue! And apparently I can have all I want! The nurse said they have a ton of them.
Disposable underwear. Little pairs of miraculous joy.
My updates from the doctors are pretty much the same. Stay healthy, keep moving, and keep your appetite up (easy).
So of course, I walked 2 laps around the ward. I can’t tell you how good it makes me feel to walk around. I’m a little dizzy and light headed from my Dobutamine drip, but with a little help, those walks make me feel so healthy again. I always return to my room wanting to walk more. I feel more revived than tired.
Thanks everyone, boring update, but sometimes boring is good!
I love each and every one of you.
New Room, New Floor, New Phase. Tuesday, August 24, 7:28 PM
So I got no sleep again. I have a feeling I’ll be napping a lot today. But for a good reason. I was transferred to a new room out of ICU and into the Heart Failure Ward of CSMC. The only other ward besides ICU to handle Swan Catheters.
I was sleeping pretty soundly for the first time in a while, and then at 1:00 AM, a doctor woke me up and told me a room was available for me. So in a few hours, they transferred me to a different tower, up to the 6th floor. I’m in 6 South East, room 6804.
It took until 5:00 AM for them to finish getting me settled, checked in, and to do the basic blood draws and numbers and stuff. It’s a really nice room. Smaller, but they’re less worried about me getting out of bed on this floor. And there’s small luxuries, like a thermostat to control the temperature of the room, MUCH better mattress and chair, and even an Echo Dot so the room is set up with Alexa.
So I will be waiting here for my new heart. I’m glad that they feel I’m stable enough to be out of CICU. Right now there is a huge rolling shade covering my window, so I look forward to seeing the view later on.
Of course, the first thing I asked upon arriving was, Will my breakfast be transferred to the new room?
It was.
At about 6:30 AM (I told you I got no sleep.), one of my doctors came in to give me an update. The plan from this point on is to stay healthy, keep my numbers steady, and just wait. He said to walk around and get as healthy as possible, because the better I am at the time of surgery, the better the recovery.
Had a nice visit with Stacy this afternoon, but I had to apologize for falling asleep so much. She was super supportive, of course, and encouraged me to sleep more. I did.
I love each and every one of you.
I Dream of Underwear Monday, August 23, 8:46 PM
I spent most of the day today out of bed and in the comfy chair, receiving meds, getting my blood sugar tested, and eating meals. I got in the chair at about 6:00 AM this morning, and just got into the bed at a little after 8:00 PM tonight.
I’m really good at sitting. And walking. And doing both with no underwear. Basically, I’m in just a gown, and in bed I lie on a “chuck” (a large 3’x3’ absorbent pad, lined underneath). When I sit in the chair, I sit on a chuck as well. Basically, my bare ass and newly deflated scrotum are always resting on a chuck.
And they’re getting tired of it. I never thought I would treat underwear as a luxury of the future. I see many commercials on TV and I dream of the support, the separation, the softness, and not scraping against absorbent material every time I shift or move. Now that I have a normal scrotum, I want to dress it up a little and keep it separate from my thighs (which are no longer crushing it, but you know, It’s a humid area of contact. I don’t want to peel it off of a chuck every time I shift for comfort.
The hard part is I HAVE new underwear in my bag here but I can’t wear it because there’s no way to launder them. So, I have no choice but to rest on scratchy chucks, and dream of the day I can wear underwear.
As you can tell, I’m feeling much better than last night. Thanks to all of you who sent me texts and emails sharing your own stories of shame and depression. We are one strong group! I wanted to thank you all for helping me at least back onto my feet so I can effectively navigate the shame waters.
As far as procedures go, I only had a long questionnaire/interview with my infectious disease doctor. I have a urinary tract infection (dr says mostly because of the Foley trauma), and then there was an infection that showed up in one of my cultures (from my Swan catheter). I’m being treated by two antibiotics, and it’s not going to remove me from the list. They’re just going to keep an eye on it. If it gets worse, they’ll “suspend” me from the list until all is well. I show NO symptoms of either the UT or the Swan infection.
So there we are. My physical, emotional, and scratchy updates. I am super grateful for all of you, and can’t wait to spend time with you again in person. Until tomorrow!
An Unexpected Ordeal Sunday, August 22, 10:15 PM (update 2)
(Second update for Sunday. Post below this is also today’s)
I’m lying here in bed unable to sleep because I’ve sort of been forced into an emotional corner here, and find myself having to process a lot to prepare myself for a most likely upcoming situation.
This has less to do with my transplant, and more to do with how I view this whole mess.
I’m dealing with a lot of shame.
Before you mentally jump to comforting me like the support heroes you are and have been since the beginning, let me just say I know that some of these are irrational, some of these can be seen from a different perspective, and some are just plain crazy. BUT, nonetheless I’m stuck with these feelings and I’m trying to process them as best as I know how.
I feel shame for what I’m putting friends and family through.
I feel shame for letting coworkers down.
I feel shame for thinking everything “wasn’t so serious” before I was sent to ER.
I feel shame for following the Keto diet so irresponsibly and for so long.
I feel shame for hogging up all of your love and support when you have your own lives to worry about.
I feel shame for not listening to my body, not hearing my body, and sometimes completely ignoring my body.
I feel shame that I don’t have the capacity right now to be the same supportive person that all of you are to me.
These are some of the feelings in the massive whirlpool of shame that I’m trying to sort out, deal with, and tackle. There are many more and they are really strong. I get really emotional and tired as I try to navigate through them.
The sense of urgency to deal with them is also making it harder to figure everything out. The rush comes from pictures that are out in the internet ether of me simply walking around the hospital in my gown, messy hair, grasping a walker, and looking quite content in the fact that I’m just walking. It’s not that I don’t want OTHERS to see them, it’s that I know if I see them, all the shame I feel will surface at once. And honestly, it scares me. I’m already shaking just thinking about that happening.
Thank you again oh mighty team for reading this. I feel like secrecy is a big part of shame. This entire blog started as a way to just keep everyone informed, but it’s turning out to be a way to get the story out of me and into the world. As emotional and difficult as it was to type this out, sharing it with others is a solid first step toward fighting the shame.
I love each and every one of you.
A Decision is Made. Sunday, August 22, 7:26 PM
Today one of my doctors came in and FINALLY said he talked to the surgeons, as well as Dr. Howard, the main transplant surgeon, and confirmed, yes, indeedy, we’re going for transplant.
The UNOS (United Network for Organ Sharing) liaison called me late last night and said that I have officially been listed as status 3. This means that It could be one to “several” months before I get a match, but all the doctors and the liaison, her name is Nana (I love it!), both seem to think I’m high on the list, and should get a match relatively quickly. I am assuming “quickly” in status 3 means maybe close to a month? In the meantime, I’m chilling out here in the CICU.
I’m feeling more peaceful about the decision, as I feel like everyone really exhausted the idea of a bypass before ruling it out. I’m comfortable that a transplant is the best path with the best chance of success. Am I bummed a bypass isn’t viable? Very. But I still feel at peace with the road ahead.
The rest of the day was another visit with Mom. Always a good laugh. She’s a loyal and loving Mom!
Where’s the Flashlight in the Night? Saturday, August 21, 9:15 PM
Mixed Day today.
Yay! List:
1 - Got to see Mom today
2 - Ate 3 meals today.
3 - Took an even longer walk today than yesterday.
4 - I feel really great, aside from all the lines attaching me to machines.
Ugh List:
1 - There was an attempt to put me on the Stage 3 Transplant list today. I was told I was on it, then told later that I was I wasn’t. They’re in the middle of fixing it.
2 - I was never spoken to by a surgeon regarding the fact that I’m not getting a bypass. I was just told by a nurse, “Hello, I heard that your going the transplant route.” When he saw the look on my face, he left.
3 - I WAS told by a nurse that the MRI I took shows a lot of scarring on my heart.
4 - I wish everyone would just stop talking about it until I see a surgeon or my committee of Doctors on Monday morning, and I get a definitive answer.
Well, sorry to confuse everyone. I’m just as confused. Until tomorrow.
And Whaddaya Know. Friday, August 20, 7:25 PM
Today was a very big day. This morning my case was presented to the committee. The way all the doctors were talking to me after my PET scan, I was expecting them to come in and tell me that we were going down the transplant road,
Instead, they said EVERYONE is still not ready to take bypass off the table. I - was - shocked. So instead of giving me a final decision today, I was sent to an MRI to add to the the info that they can re-examine on Monday.
I have one more weekend of hope! But you know, it was more of a gift than just that. I will feel much more calm about a possible final decision for transplant on Monday (or Tuesday), knowing how exhaustive the consideration of a bypass was. So today gave me a lot of peace no matter what the news is on Monday (or Tuesday).
The MRI was uneventful, and way easier than i thought it would be. I also had s Swan Catheter in the right side of my neck. They had to remove it for the MRI (there’s metal in the sensor), and replaced it in my left shoulder. SO MUCH EASIER!
I think my highlight of the day was, I walked around! I did a healthy circuit of the unit, and then went out onto the glass enclosed bridge that links the north and south tower. I got to stand in sunlight, and look at the Beverly Center. I know. It’s not THAT great of a walk, but I made it back to my room without needing the wheel chair, and without getting any shortness of breath at all. When I got back to my room, Stacy was cheering me on at the door. It was a very liberating part of my day.
I love each and every one of you, thank you for your support and love! It’s what’s getting me through this challenge, and I don’t take any of you for granted!
Bears of the Bad News Variety Thursday, August 19, 7:56 PM
Well today felt like more bad news. Today the results of yesterday’s PET scan were shared, and it looks like after all is said and done, only about 87% of my heart would be active, and they’re not sure if that’s enough to survive a bypass. Even my Dad thinks that’s low.
So, we will most likely we will be going the transplant route, They will be presenting my case in front of the panel tomorrow and then make a final decision. We’ll know for sure tomorrow.
I’m grateful for everything, but disappointed. Really disappointed. I keep telling myself that when i had the heart attack (whenever that was), THAT could have been the end. I am trudging on, sad but hopeful, down but supported (thank you!), and trying to stay strong.
I was radioactive. Wednesday, August 18, 8:04 PM
Oh my god you guys, I was radioactive today!
This morning, I had a meeting with the Transplant Coordinator, and she gave Stacy and I a “teaching” as she called it. I now know how long I’ll wait and got a lot more detail about how the after care goes, and if I don’t get on the list, other alternatives.
I also got some good news about my CT scan. It was for my lungs, and Dr. Levine figured out everything. The funky shape on my right lung was an ulceration from poor heart function. They were able to compare it with a previous CT from Kaiser, and they said it’s healing quickly. To the point that it will be of no consequence by The time of any surgeries.
Here’s where I became radioactive. After that I was whisked away to a PET scan which is part of a Viability Test. The results will tell them whether my heart’s muscles are strong enough to reasonably support a bypass instead of a transplant.
In this test, I was injected with radioactive isotopes and all the nurses stayed a good distance away! When you’re radioactive, They call you, “hot”.
I was “hot”.
They’ll look at this report along with everything else, and Friday is the big day when they decide whether we’re going down the by-pass route or the transplant route.
I will keep you all up to date with the results! Love you!
O Cedar Makes Your Life Easier… Tuesday, August 17, 6:47 PM
Life here at Cedar’s Sinai is very different than Kaiser Life. It’s a teaching hospital, so there are a lot of really young people here. Not many older, established nurses. They’re all great though and very attentive and knowledgeable. Food here is way better. I get to eat more, but more specific foods for my diet.
I met with a Transplant Psychiatrist on my medical team, Dr. Christianson, and we had a discussion about my past, what brought me here, and how I cope with things. It made me think of my very first bout with depression (which I was honest about), and all the support I was lucky enough to fall into.
It’s the same with now. Whenever I had that heart attack, that could have been the end of me. Instead, I was lucky enough to not even notice it. I know I’m in here for a transplant, but I’m grateful that I’m in here at all.
I’m also grateful for all of you guys. My network of support has been all of you. There are times where I feel a little low, but then I’ll see Michelle, Dean, and Karen riffing off on something, one of Diane’s avatars, a silly meme, or a kid’s first day of school, and it really helps me feel like part of my old life is still out there and kicking, and I’m still in it.
Thank you everyone. From the deepest part of my failing heart, Thank you. I’ll make sure and thank you again from the bottom of my new one as well.
Transfer to What What?!? Tuesday, August 17 12:59 AM
This update will be brief. I’m super tired. It was a great day. Then it was a not so great day. We’re talking about Monday the 16th here. Even though the update is dated Tuesday, it’s just way early in the morning.
I woke up and spent the day out of bed in a chair. I got to eat all three meals today sitting in a chair at my table, and It felt really good! Then at 6 PM my nurse came in and said, “Surprise they found a bed at Cedars, they’re coming in an hour to transfer you!“
So I get to Cedars ICU, and I am caught in a whirlwind of changing, cleaning, and prepping. I’m told that I need an A-line in my left wrist and that I need it tonight so they can monitor my blood pressure continuously.
Do you know how Cedars is a teaching hospital? Well that A-line that should have taken about three minutes to do, took over an hour. It was the students first time. He tried it twice, failed, cursed, and then finally the doctor came in and took over.
The doctor also chatted with me and said that more likely we will go the transplant route. They’re still going to examine all possibilities and look at my angiogram, but the situation isn’t like what we all thought. I’m going in tomorrow morning for a PET scan, so we’ll see I guess.
OK, I’m super tired I’ve been up and out of bed since 6 AM with no naps during the day. Until next update, I love you all.
Colonosco-What What?! Sunday, August 15, 9:15 PM
Hi everyone!
So here’s a little taste of what my Saturday was like. It started with the GI Doctor visiting me and saying, “I know you’ve drank 10 liters of Golightly and lived on very few liquids for the past THREE DAYS. Well we’re going to try and do your procedure later this morning so that you can finally eat and drink water.
So at THREE FOURTY FIVE PM, they arrive and the Dr. says “Hello Gene, We’re here with good news and bad news.”
I’m starving even more now.
“We’re here to do your colonoscopy. But with your heart condition, we would like to try this without any sedation.”
“But didn’t you say ‘not full sedation’ before? And that with ‘not full sedation’ some still couldn’t take it?”
“Yes, but we’re worried about your heart. Now the sedation can affect your heart, but if you can’t take the pain, let us know and we’ll stop because that could affect your heart as well.“
By Jebus, the hunger took over and said “Let’s do it.”
So for the next 20 minutes, I “relaxed” as the camera and water/vacuum hose explored my innards. As I did my best to control my breathing, I watched the OMIGODTHEPAIN screen.
“Gene, can you see the screen? This here is your…“
We’re really going to have a conversation right now? They continued to tell me various things about various anomalies, and at the midpoint, I finally I said mid-groan, “Is all this going to be on the final exam?”
They laughed and got the point, started the exit then finished up. Finally, they said, “You handled that better than someone ON sedation.”
So I survived, but I see why there’s sedation. Happy news, I had a nice hot meal for dinner (the first in 3-1/2 days), and with the clap of my buttcheeks, MY WORK UP IS NOW COMPLETE! Now all tests are done to get on the Transplant list. Of course, we’re hoping they can do a triple-bypass instead (there’s still a 50/50 chance), but If I need to get on the list, all tests are DONE.
Today (Sunday) was a nice rest day, and hopefully tomorrow they’ll have a bed for me at Cedars. If not, The goal this week is to eventually get me over there.
Until next update, I love each and every one of you!
Lunch with Filipino Princess Leia Friday, August 13 11:30 PM
Hello everyone! The morning started off so wonderfully. I was awakened by the voice of my roommate and good friend, Stacy.
We had a lovely visit until around 11:30 when Dr. Monica Lee comes in and announces (in side pony tails, look! my doctor’s wearing pony tails!) that I need to be whisked away to a PFT. I was so excited, I forgot to ask what it was. But Stacy referred to it as “the Michael Jackson song” as she was leaving. “Pulmonary function test“ is now officially known as “the Michael Jackson song.“
My nurse for the dayshift, Zhong, shoved a urinal in my hand, (he had no idea this test was scheduled and 20 min. prior gave me another pee diuretic), disconnected me from the bed, and wheeled both me and my medication contraption a short distance to the stress test lab.
The TINY stress test lab! Where I’m supposed to take a the Michael Jackson song all the way in the corner! In a wheel chair! With my meds contraption sidekick! Amongst the oxygen tanks, treadmills and cycles!
The doctor looks at me and asks who I am by slowly saying my name like a question with a look of “PLEASE don’t be him!” on her face.
That face. Wait, that VOICE! Didn’t that voice sell me Jennie Craig at one point? I swear to god that’s Filipino Princess Leah! Intercultural doppelgängers!
We Keystone Cops-ed our way into the corner and she started the test. Luckily, I’m a singer and I’m doing well!
“Take a break. We need to let the machine calibrate for 4 min.”
“Thank you Filipino Princess Leia. Since we’re taking a break, can I use this urinal?”
Deep sigh.
Disapprovingly, “Go Ahead.”
I hadn’t realized it was a timed 4 minutes and the program automatically starts the next test. I try my best to squeeze out 600 ml of pee (diuretic, remember?) and it feels like at the same time Niagara Falls is pouring out of my ass onto the thinly covered wheelchair.
I forgot to mention that I was full of Golightly in prep for today’s colonoscopy.
“Just go.” says a wise Zhong reassuringly.
I finish the test and Zhong blurts out, “He’s done? He’s done.” Answering himself, he wheels me out of the corner with the deftness of an OKGO video (he knows what I’m sitting in/on). And out the door we go.
As the nurse whisks me and my drip contraption away, I shout, “it was a lovely the Michael Jackson song!” leaving Filipino Carrie Fisher with an odd look on her face. But dammit, we’ll stop the First Order.
We get back to the room. Zhong expertly reconnects me to the machines, secures my drip wheely-pole, and leaves my room with, “I’m gonna clean the chair.”
That, aside from calling her FPL or FCF to her face, I swear to GOD, hand over heart and over the next heart coming in, was my MORNING. So much more happened today, but for brevity, some of it in Haiku:
Colonoscopy.
Starve all day and wait for it.
Nah, it’s tomorrow.
Love you!
Who the What What? Thursday, August 12 at 11:26 PM
Well today was a whirlwind of information. And… Change.
It looks like they are preparing me for a bed to bed transfer from here to Cedar Sinai, and they were trying for tomorrow.
“Can things really change… Sure”
Strangers with Candy.
First off, my colonoscopy was supposed to be today and “squeezed in“ (See what I did there?) at 9 AM this morning. But, because I hadn’t “gone clear“ (Help me Xenu!), They pushed it to tomorrow. This meant, a full day of clear liquid diet. Which I liked once. Once. Maybe twice.
I realize the irony, of trying to “go clear” in a room with a direct view of the Scientology center. In their case, they are trying to be rid of thetans. With my colon, it’s trying to be rid of all shit. Going clear. Maybe my colon needs to buy a set of tapes by L Ron Hubbard, and host a special with Leah Remini.
Today I broke free, and ran down the hallways! Meaning, I was wheel chaired to my dental x-rays. But it felt so nice sitting upright, comfortable, and going past huge windows with views. Views of the Scientology building. But views. It was nice.
Happy news, family visits! Yay! I’ve been grateful to have the chance to catch up with my mom, my dad, my stepmom, and my sister. They are all doing well and seeing them in person does so much for my spirits. Tomorrow I get all this and Stacy too!
Well, that’s it for now. Thanks for tuning in! As always, I love each and everyone of you. Read that last sentence slowly.
I love each and everyone of you.
Who the What Now?!? Wednesday, August 11, 9:10 PM
Hello everyone, A lot has happened today. If you’re interested, come on in, sit down, and buckle your seatbelt.
Regarding the surgery, what has always been talked about as a transplant, today has a 50% chance of being a triple by-pass. They studied my x-rays and all the tests that I had done last week and many of the Kaiser coronary surgeons think although they may not be able to perform the triple by-pass, there’s a 50/50 chance that the Cedars Sinai surgeons can. But who knows, things change so quickly and many times I am not in the loop with the doctors. I just end up always looking the wrong way when someone says, “Look, that thing we talked about.”
Also, my catheter came out today! It’s healing really well, but everyone who told me, “oh yeah, catheters are nothing going in.” never said what they were like coming out!!! Especially after being in your groin for six days. But it’s out now, and I can finally bend and go to the bathroom to go to the bathroom.
Now there’s a swan catheter in my neck WHERE IT SHOULD BE. My groin is free to do groin things, while my neck holds its proper load.
Found out I have a colonoscopy tomorrow. Wheeeeeee! That meant liquid diet today. Which is odd. Because they also increased my diuretic to get rid of some more water. This will be the most interesting tug-of-war ever.
Finally, happy news, my family is here! Dinah and Mom flew out from Atlanta, and Dad and Joann flew out from Washington DC! I got to end my evening, with Dinah and Mom. We got to catch up and laugh a little (and cry too). I’ll see Dad and Joann tomorrow morning.
I’ll update everybody on what’s going on with the whole by-pass vs. transplant decision. Catch you on the flip side.
❤️❤️❤️
What’s going on now??? Wednesday, August 11 at 1:15 AM
Hello everyone, well, it looks like I was being prepped for a pretty swift heart transplant. I have been visited by the dentist personally, in my room, and I I have been drained of about 20 vials of blood for tests. All at once! Things seem to be moving fast…
Except I am still lying flat with a cardiac catheter in my groin. This is crazy uncomfortable for me. But I know it’s necessary, and everyone has been so great at trying to make me comfortable.
I keep getting different information from different doctors, and now I keep getting different information from my family whom the doctors have spoken with over the phone. There’s a lot of information going around out there from the counselor for the transplant, Dr. Mondragon. It seems like my family is getting more news or interpreting more news than I am getting.
Update on that as I get more info, but it seemed I was on a fast track to a new heart! ❤️ (Provided I can get my A1C below 8. It’s 8.6 right now.🤞) Today I was told would be a whirlwind of tests and being carted around. None of that happened today. So who knows what’s happening now? As soon as I know, you’ll know.
Tree trunk (Edema) update: I have been drained of about 60 L of water. Still a little more to go, but my feet, my hands, my legs, and most importantly, my freakin’ groin, are all close to normal size now. Too bad I’m stuck horizontal with a cardiac catheter still in me. Otherwise, I would do a little dance.
That’s it for now. Thank you everyone for all your love and support and thank you for all your offers of help. When I get strong enough, I’ll be sure to thank you all properly.
Whatever that means. Rowr. Ha. Ok I’ll shut up now.
❤️❤️❤️

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SEPTEMBER 2021 POSTS

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Bye Bye Balloon (pump) (for now). Thursday, September 30, 10:23 PM
So far, all is good with my numbers. No balloon pump needed. Although I stopped drinking any extra fluid. I only drink what comes with my meals which is between 4 to 8 ounces of liquid. I’m allowed up to 1.5 liters of additional water per day, but I only use about 400 mls to take medicines and mix up my Metamucil packets every day.
I’m surprisingly not thirsty (but regular!), which is helpful, but my skin is really dry and my lips get really chapped if I forget to apply lip balm every few hours. I was told to start drinking a little water and when I did, that’s when my pressures went up. Now that I’m back to just drinking the extreme minimum, all is ok.
There’s no definite answer though. Each morning, the medical team says “Not today”. So there may come a day when they say “Today”. Hopefully not. Dr. Levine is fighting for me though. He thinks it’s not worth it, as I won’t be able to stay physical and active like I am now, and even with my numbers slightly elevated, he wouldn’t go blimp on my until it was absolutely necessary. I’ll be bed ridden and won’t even be able to bend my leg, let alone move and walk around. That makes for a tougher recovery. He’s just focusing on trying to get me a donor.
Last night was another sleepless night because of my neighbor. There was a commotion going on in her room, which lead to a lot of noise outside my door. Before that, my drip monitors kept going off because the bags kept depleting. I’ve been up since about 3 AM. I was able to take a short nap here and there, but there’s always a procedure or vitals that need to be done, so I wake up.
I’m going to rest my head on a pillow now and use my lovely earplugs to play it safe. I love each and every one of you.
…What?
From the Pit of My Stomach. Wednesday, September 29, 11:48 PM
Just waiting.
Missing food that has flavor.
Still grateful.
I miss tasting things. The food here is good, but it’s very bland since I’m on a low-sodium, heart healthy diet. I know there are so many more things I could eat if I could just cook for myself, but I’m stuck here with the cafeteria food.
I miss sweet things, savory things, foods that have an actual aroma. Vegetables that aren’t boiled within an inch of their life. Eggs that don’t need margarine added to make them taste like something.
It’s only 11 pm and I’m already hungry for breakfast. Here’s breakfast: One piece of wheat toast, a banana, 5 apple slices, 1 tablespoon of peanut butter, and a 2/3 cup serving of cheerios with non-fat milk. It used to be enough for me. Now because all of my meals are small and I’m not allowed a snack, it’s seems so scant and I get hungry quickly after.
Well, It’s better than starving like I did at Kaiser with one clear liquid dinner per day for three days in a row.
It kills me because I started shopping for food online. I see so many low-sodium options that I’ll be able to have once I’m in recovery. I need to stop this because it’s only making me hungrier. I did it under the guise of “preparing” for my new nutrition guidelines, and eventually got romanced by all the possibilities. Did you know there are cookie recipes for low sodium folks?
Ok, thanks for emotionally fooding it up with me. I’m hungry. I think I’ll just go to bed and try to wake up as close to breakfast time as possible. After they do my 5am numbers. And weigh-in. And blood draws.
I love each and every one of you.
Congratulations, It’s a Girl! Tuesday, September 28, 11:57 PM
It’s not a girl. It’s not a boy either. In fact, it’s not a baby at all. I’m not pregnant.
I was talking with Stacy today. It was her first visit in a while, and we caught up on a lot. I had mentioned to her that a lot of people, from medical staff to friends and family, tell me things like, “This weekend is the weekend!”, or “It’s going to happen in a few days, I have a feeling!”
I know these things are meant to make me feel hopeful, but in reality, they do the opposite. I automatically think, “Well, you just jinxed it”, and I get a quick punch in the gut feeling. It goes away rather quickly. Like in seconds, really. I wondered aloud as to why this happens.
Stacy brought up a good point. They’re reminding me and celebrating in advance that special time when the heart offer does come. When the baby arrives. Here’s the difference. With a pregnancy, there’s an estimated gestation period. It’s appropriate to expect when you’ve been waiting too long, or to bet on the delivery date. With me and my heart offer, it is completely random. It’s just whenever I get a match. This could be ANY time within the next few minutes or months. Hearing these things just reminds me of how long I’ve been waiting.
Granted, I have been waiting a while, and I can see a lot of raised eyebrows on the doctors when they see me still in the same room, still hooked up to the Swan, still waiting. As soon as my blood type (O) comes up, they have a look of recognition, and all of a sudden it makes sense that I’m still waiting. I can only receive a heart from another type O donor. Where as A, B, and AB donors can all use my O blood and organs. So, as I was warned at the beginning of this process, that could hold me back a while in the waiting game.
At one time, my mood was more affected by hearing these phrases meant as well-wishes. Now, I take them as part of the journey. I can even see them a bit more for what they’re intended to be. I still would prefer not to hear them, but that sudden sting isn’t as bad as it used to be.
Believe me, I’m very appreciative of all the support I get. All forms. I love each and every one of you.
Neunundneunzig Luftballons. Monday, September 27, 10:29 PM
Today’s numbers are still stable and I’m still pretty much just waiting. I did get news today though that over last night, my pulmonary artery pressure (PA) went up to the 60s. Normal is 20s. Normal for me in my condition is 40s. Because of this spike, the doctors are keeping an eye on it, and if it happens to go up too many more times, they will install another balloon pump.
This would be my second one (not my 99th). I had a version of this when I first had my angiogram on August 6th and found out I had to have a transplant. They went in through my femoral artery, and I had it in for about a week. If you’ll remember, it was horribly uncomfortable. I had a lot of back and neck pain as I was bed ridden and had to lie flat 100% of the time, without bending my leg. I had to eat lying down. I had to use a bed pan. It was almost unbearable.
The thought of having this again until I get an offer… I don’t even want to think about it. Hopefully my PA number stays low. They mentioned they can also install a pump through my shoulder, but if the procedure goes the way my third Swan went, they’ll go the “easy” route and go through the groin again.
I hope I don’t need one. I hope my PA stays ok. I hope if I do need one, they follow through with what my medical team tells them, and they go through the shoulder.
I’ll find out more tomorrow morning when the team marches into my room for their morning visit. So far, my PA reading is in the 40s like it always is. Early tomorrow morning I’ll see what it is and cross my fingers. This will hopefully be in the 40s again, and all will be well.
If I could ask you all to think good things about this, I would love some group thoughts sent over! I guess just think “Low PA numbers for JJ!”, or “NO femoral balloon pump for JJ!” Just please not, “USA! USA! USA!…”
I love each and every one of you.
My Two Sisters. Sunday, September 26, 7:25 PM
My numbers are still stable and the doctors are all happy with my exercise and daily activity. I’m just waiting for an offer.
While waiting, I wanted to assign some head and heart space for some specific gratitude for 2 special people right now.
Stacy, my roommate/friend/sister has been here for me so generously. She’s let me vent, she’s held a mirror in front of my face when I needed it, she’s been here physically to just keep me company, and she’s been here emotionally for me like a rock star. My gratitude for her love and support are over-flowing, not to mention the trust that I have in her which is so invaluable and so rare.
Stacy is, for all intents and purposes, my sister. I also have a biological sister, Dinah, who has been like a life line even though we’re separated by several thousands of miles right now. From helping me with my relationship with my Mom, to figuring out logistics and just plain loving and supporting me through texts and phone calls, she’s given me a lot of perspective and helped me with shame issues and other things that thanks to her, are no longer.
It’s quite a unique feeling having a sibling who knows you so well through a bond that’s been grown over decades, and keeps on growing. Both Stacy and Dinah are my siblings. I promise to be the best big brother possible to both of you.
So many people have been so great and helpful, and I’m thankful for it all. I love each and every one of you.
Death 2021: Smaller and Compact. Saturday, September 25, 8:03 PM
Physical update: All is still the same, stable numbers and waiting.
The first day of the weekend is ending. It’s weird going through the weekend when you’re waiting for a donor organ. All the doctors and nurses say that weekends are the times when there are more donations because people are more reckless on their days off. I have a view from my room of the helipad where a transplant begins for so many people. Some day for myself. I hear and see it land almost daily and imagine the gifts and the donors who gave them.
It’s strange how this whole thing has made death such a casual term in my brain. It’s actually helpful. While it’s helping me see the gift more than the mortality in each donation, it’s also taking a lot of the weight off of my own death. I think I understand my Dad’s attitude toward death a little more. Although mine is not based in religion like his, I see how the fear of it can be lessened. I understand more why he’s not scared of it, and how that’s different from actually welcoming it.
I think a lot of this has to do with being able to let go of the fear once you look it in the face like any other fear. I thought that in letting go of this specific fear, I would fall into this warrior-type relationship with the big monster death. That’s not where I landed. I’m now in a place where death is now the same size as all the other futures. I still see it there, but the other possibilities often outshine it. It takes up a lot less space than it did before. It feels less ominous and more appropriate.
Of course, this only applies to my own relationship with my own death. If anything happened to anyone I actually know and love, it would be a different story.
Although that has become a little more understandable as well, it’s so much harder to let go of others.
I love each and every one of you.
Blood Sugar and Sweet Mom. Friday, September 24, 11:55 PM
I had a little blood sugar worry yesterday and today. It’s been shooting up quite severely in the afternoon/evenings. The nurses and I figured out it was a new diuretic that I’m on. It works on a different part of the kidney than Bumex does. Although Bumex doesn’t affect my blood glucose, this new one (I believe it’s Midamore), does raise my BGL.
This morning the medical team came in and confirmed that it’s the new medication that’s giving me high BGL readings, and that they’re not worried about it. We are currently just treating it with more insulin.
Today was my last visit with Mom before she returns to Atlanta tomorrow morning. I will miss her visits. She can hardly hear me so I have to repeat everything louder. I always feel bad because it sounds like I’m yelling at her, but I’m just trying to help her hear me.
One of my favorite things about our visits, is that I can immediately feel how much she loves me. She really does everything she can to help me, and is so eager to do it. When I stand up just to adjust my robe, she stands up and asks if I need help right away. It’s kind of funny how instantly attentive she is, and we eventually started laughing about it.
Every time a new staff member comes in during the day, one of the first things they’ll hear her proudly announce is, “I’m the Mom!”
Having her heart so close to mine both physically and emotionally these past few weeks has helped me so, so much. There’s something about the love from you’re mom or dad that makes you feel safe again like when you were a kid. I will miss that!
I love each and every one of you.
Residents. Why? Thursday, September 23, 5:35 PM
I have a question that no one here is willing to answer honestly. Why do residents make rounds individually to patients saying the exact same thing and asking the exact same questions? Like I mentioned previously, these visits are obviously for them, not the patient. There is absolutely zero benefit for the patient, and 100% annoyance.
In the mornings, I have maybe 3 residents come, about 15 to 20 minutes apart, and ask the exact same questions, and telling me the exact same information. Then the actual medical team comes in and does the exact same thing, but sometimes giving me contradictory info to the residents. Can’t they just all come in together? It’s one of the reasons I get up so early. I know the morning is going to be interrupted about 4 times.
My impression of residents from my stay here is that they pretty much don’t know what they’re doing. About 80% of what they tell me is incorrect or never happens once the real medical team comes along. The bad side of this is that they can scare you sometimes. Until you’re familiar with the system, you’ll think their info is accurate, as opposed to just thinking, “They’re just a resident. I’ll ask the real doctors.” It was a resident that made me feel so hopeless when I first arrived here at Cedars. I thought an actual doctor was telling me, so casually, that there won’t be a by-pass. “We usually just go the transplant route.” I can still see her condescending smile.
Cedars is a training hospital and patients get “trained on” all the time. I mean, I still have nerve damage from a botched A-Line I got on my first day at Cedars. It was a med student who had never done one before, being trained by a resident who thinks of the patient like a donated cadaver (the one with the “smile”). A 3 minute procedure took 40 minutes and a lot of whisper-cursing from the med student.
It was horrible. My first night in ICU here and I never saw an actual doctor. I saw a ton of “resident ego”, but no actual white coats. I was given a diuretic then denied a urinal for 40 minutes until I yelled at them. I could see the nurses rolling their eyes during the process, but didn’t quite understand it until now. Oh, and the A-Line is long gone, but I still have that nerve damage!
All in all, I get it. These are tomorrow’s doctors. But today, they are annoying AF, and I wish I didn’t have to be such an integral part of their training. It must be integral, because they annoy everyone. Even the nurses and aides think they’re useless. If that many people dislike them and they’re still here, it’s because they have to be here. The nurses and I have been sharing resident stories, and it’s been eye-opening to say the least.
If you’re a resident, please actually know what you’re saying and use this time to learn how to communicate with patients. One resident did that and it was so refreshing. Check your ego at the door as even us patients see when your false bravado is trying to hide your insecurities. And please listen to us patients when we’re answering your (often stupid) questions. Also, listen to the nurses. They actually know what you’re pretending to know.
If you’re not a resident, good for you. Your annoyance factor has dropped dramatically in my eyes!
I love each and every one of you (Ok, even you residents).
Like a Frikken’ Broken Rubber Band. Wednesday, September 22, 9:56 AM
It’s an early post today because, well why not, I’M AWAKE!
Ok, my last post was all about the power of resilience. This one is about how at 3:10 AM I think resilience is stupid and I don’t have any. That’s about when a Filipino musical was being staged right outside my door. Full voice, full laughter, “sing out Louise!” and little Maria Louise didn’t fail.
In this musical, the lead gets several phone calls and answers them on a speaker phone (set to max vol) so the audience can hear both sides of the conversation. Even with a closed door between the house and the stage. So…
2:15 AM
Finally drifting off to sleep.
3:10 - 3:25 AM
Tagalog! The Musical: You heb a Pone Call.
3:35 AM
ALARM: Heparin drip is empty. Nurse comes in to change.
3:45 AM
ALARM: Milrinone drip is empty
Nurse comes in to silence alarm.
4:00 - 5:15 AM
Output numbers, Blood Draw, Full line/tubing change. And CP (“Clinical Partner” = Aide) comes in to weigh me …or not.
Finally I can drift off for a few min—
NOPE!
6:15 AM
CP finally comes in to weigh me. She’s running late. She must have had another musical to stage in front of another closed door.
6:30 AM
Nurse comes in, one of the blood draws were invalid, she has to draw more blood.
6:45 AM
I start to drift off finally. Zzz—
7:00 AM
Shift change! Hello day shift nurse, she checks my vitals. Asks how I slept. I answer. She graciously tries to let me sleep and alerts the staff to leave me alone. BUT…
7:25 AM
Day shift CP comes in for vitals (which were just taken by day shift nurse). Asks how I slept. I answer. She jokes. I don’t joke in return. She can’t read the room and keeps joking about me doing kareoke all night. I now hate the Filipino accent. She’s about to leave, but…
7:45 AM
Resident comes in to ask the same questions he asks every day. I tell him I just want one hour of continuous sleep. He also cannot read the room. He asks me questions about why I couldn’t sleep. I answer. In the middle of this, the CP leaves and says on her way out, “He was ih-singing ka-ra-oh-keh all night long.” He asks me all his questions anyway. I barely answer. He finally leaves knowing these visits are solely for his benefit, not mine. Why not just come in with the rest of the team?
Note: This is the same resident who asked me a question about the cardiac output process which I answered and explained to him fully. He had no idea. Again, visits are for him, not me.
I try to sleep but give up and just get out of bed. Which is good because every 10 minutes there’s another doctor visit plus all the things that just happen in the morning.
It’s only 8:40 am and I’m ready for bed.
Oh look, breakfast is here. This is going to be a great day.
I will probably not post again at the usual time tonight, as I hope to be sleeping. Until tomorrow!
I love each and every one of you.
Like a Frikken’ Rubber Band. Tuesday, September 21, 8:13 PM
I’m starting to realize how important resiliency is in my life right now. Both physically and emotionally.
Physically, my heart has proven it’s extreme resilience. From a heart attack that I literally didn’t even notice, to working hard right now waiting for it’s replacement.
Emotionally, both my heart and mind have served me well through this whole process. I’ve surprised myself with my own attitude about what’s been going on as it’s unfolded. It’s been a rare moment when I haven’t had some sort of hope in sight. Either I’ll talk to my family, or read texts or emails from you guys, or even just sit and focus, and I can almost always see some light ahead of me.
I don’t religiously pray, I don’t believe in any specific dogma, I don’t have a need to “know” anything about a higher being, or what happens at the end of mortality. I’m realizing I have a lot of resilience in my spirituality. If there is a higher power, do I think it will be simple enough for any human to truly understand? I would hope it would be way more complex than that. To be able to take this unknown and still live a life that is loved as well as loves regardless of any “heavenly reward”, this truly takes resilience. A willingness to question and sometimes shift your spiritual foundation on a regular basis doesn’t come easy.
All this has given me good training for what I’m going through now, and what’s ahead of me. I’m extremely grateful to have unknowingly prepared for this. I’m also grateful for all of you. I love each and every one of you.
Just What Makes That LIttle Old Ant…. Monday, September 20, 10:36 PM
Another day of waiting, and another day of good numbers and stable lungs, kidneys, and heart. Every morning, several doctors come in (separately) and ask me the same questions.
Any pain?
Shortness of breath?
Any discomfort urinating?
Swelling?
Did you walk?
Etc…
I answer all of them, then they tell me that my numbers are good enough to be stable, and bad enough to stay in Status 3 on the list, so I’m in a good place right now.
“Hang in there, It could be any time.”
“Weekends are a busy time for transplant offers!”
“Can you hear the helicopter landing on the next building? That usually means an organ has been accepted for someone.”
“Hopefully, not much more time to wait.”
I don’t think they realize that I don’t want to hear these things. I know they’re trying to get my hopes up, but I want my hopes realistic. The more I’m grounded in reality, the more patient I can be. I can deal with that better than high hopes that are not likely to be met.
There is one doctor who is honest and encouraging at the same time. I believe I’ve mentioned him before, Dr. Levine. He’s my pulmonary doctor and has done transplants here at Cedars (with his colleagues) for over 30 years. I look forward to his visits every morning. His visits, my walks, my visits, and my naps are the highlights of my day.
I’m so grateful to have the team working on me who’ve been doing this procedure for 30 years. Thank goodness they haven’t retired yet. I appreciate Dr. Levine’s true understanding of the situation, and his approach to what could easily be a dismissive “Hang in there!” response.
Instead, he tells me, “You take care of your mental self and attitude. We’ll take care of your physical body, and we’ll both control what we can control. The rest is just waiting for a match.”
I hear this, or a version of this every morning from him, and it really is a large part of what gets me through the day.
Thank you to Dr. Levine, and thank you to everyone out there thinking of me. I love each and every one of you.
Whoops! Sunday, September 19
So sorry, I fell asleep early and missed writing a post for the 19th.
All is well. Just spent the day waiting. Updates will continue tonight!
I love each and every one of you.
A Series of Naps. Saturday, September 18, 11:57 PM
The pain management for my neck and upper back is going so well. This stupid Swan may be uncomfortable and cumbersome in it’s location, but I’m so grateful that I don’t’ have to deal with the back pain like last time. It makes all the difference. My better mood is back, and it feels less threatened than it did on Thursday evening. Thank you everyone for helping me get through it all.
I was really sleepy today which is a little odd, since I didn’t have any magnesium, which is usually the thing that makes me drowsy. I think I might have just been tired from the anxiety about the new Swan, and today it caught up with me. Whatever reason, I’m happy to rest and get sleep when I can.
A slight change in my routine has to do with measuring my cardiac output, or “doing my numbers”. This happens every 12 hours, 5:00 PM and AM. Generally, after the measuring procedure, there is a major blood draw from the 2 different ports in the Swan. I’m not sure if my vitals are indicating anything weird or not, but now they only do the blood draws in the early morning. The evenings are just the measurement. According to my nurse today, she mentioned “letting me keep some of my blood”. I”m not sure if she was joking, or if my hemoglobin is actually low. They’re still having me pee a lot though (Bumex) to keep the pressure around my heart low.
Something that made me happy today: I got some good feedback on the Kintsugi party. I’ve actually been getting good feed back since I mentioned it. It lifted my spirits knowing that so many people are interested in it! I will try my best to make it happen when I’m able!
Thanks everyone for all your emails and texts. They work wonders for my attitude and outlook. I love each and every one of you.
Waiting Patiently. Friday, September 17, 10:23 PM
Time is ticking by pretty quickly considering the fact that all I’m pretty much doing is waiting. You would think that it would crawl by, but I can’t believe I’ve been in this hospital, Cedars Sinai, for a full month. I was transferred here from Kaiser Sunset on August 16th. I first checked into Kaiser Panorama City on July 29th.
It seems to have gone by so quickly. Those first few weeks went fast because it was pretty much procedure after procedure to check everything off of the work up list to get to status 3 or higher. It worked, and now I’m just maintaining my place on the list.
Being a foodie, I’ve been spending a lot of my wait time thinking about some of the things that I’ll miss since I won’t be able to eat them as a transplant patient. One of them is Sushi. I can’t have raw fish because of the risk of transferable diseases. They did say that I can have any sushi that’s cooked, so crunch rolls, smoked eel, California rolls, etc. are all acceptable.
My nurse today said that I should have a “last sushi meal” here at the hospital before the procedure. That sounds so yummy, but I’m feeling like I need to stick to the hospital diet to make sure I stay at least status 3 on the list. A lot of people have visitors bring food in from the outside, but I don’t know what they’re here for, or how long they’ve been here. I’m ok with sticking to the plan so far.
Swan-Ganz report, it’s still super uncomfortable and tugging, but the neck and back pain are more or less under control. That’s a huge relief. My mood is better, and I’m finding it easier to attempt to adjust to this catheter location.
Thanks for reading along with me on this journey so far. It’s so crazy. It feels like another life. It also feels like a lot of support, love, and friendship. I’ve always known that you guys were amazing friends, I’ve just never felt anything like this before, and I’m incredibly grateful.
I love each and every one of you.
I Still Hate Swans. Thursday, September 16, 8:44 PM
This Swan is still the worst of the three that I’ve dealt with. Although I got some pointers in pain management today.
I have a rolled towel that I now use to support the back of my neck. That helps a lot. The nurse also gave me hot/cold packs to alternate. They’ve helped a lot too, although I go through a lot of them. My mom massaged away a lot of my knots in my upper back and neck area, then after that I rested a bit. And finally, my body is low on magnesium. So they give that to me in drips. It’s a relaxant, and also helps my neck and back pain a lot.
So the pain management has gone well today. However, this Swan is still incredibly uncomfortable and just a general mess of tubes.
It goes into the right side of my neck, so the dressing (which is huge) covers my chin and lower neck. It really limits my movement. All the wires and tubing run across the front of my chest and are anchored by my left shoulder (sort of where my old Swan used to be). Then everything is hanging at my left arm/bicep. When I say everything, I mean tubes, wires, and even heavy plastic syringes that just dangle and poke at my chest and arm.
I can’t sleep on either side anymore. Only on my back. Which I hate. I’m basically sleeping almost sitting up now because if I don’t I’ll cough all night. I got a broken hour of sleep last night, and I’m thinking it will be like this for a while until I get more acclimated to the shittiness of it all.
At least now, I do have some pain management techniques, and my mood is a little better. Still hate the Swan, still love each and every one of you.
Swans are Horrible Birds and I Hate Them. Wednesday, September 15, 9:35 PM
The day started out well enough. I was out of bed and in my chair by the usual 6 AM. Later in the morning, I leaned back in my chair and there was blood everywhere. My Swan catheter had been punctured in a bad area. After clamping the tube and cleaning up, the nurses informed me I would need a new one.
The procedure didn’t scare me (This will be my third Swan), it’s the fact that they moved it from my upper left clavicle to the right side of my neck. When it was in my left clavicle, it was easy for me to move my head and stretch my back. Now that it’s in my neck, it limits my head movement, which eventually causes stiff neck pain which turns into upper back pain. I know this because this is where my first Swan was.
So now I’m sitting here with my third Swan in the same uncomfortable place as my first one, and the neck pain is already starting. I am now officially complaining. I’m not looking forward to the long wait for a series of offers now laced with back pain. I swear it’s been taking a lot for me to stay positive and keep it together. I hope the back pain doesn’t break me. I already feel like throwing things.
I’m going to sit here and try to ignore my neck for a bit. Maybe I’ll pound my head on the table for a while to distract me. I literally did this with my first Swan, and I’m seeing a lot of head pounding to come.
I hate this. Yes, I hate the birds too. But I love each and every one of you.
Many Roads to a Transplant. Tuesday, September 14, 9:34 PM
I’ve been having a lot of conversations with the nurses and learning a lot about the transplant process that wasn’t all covered in the initial teaching. Some of the nurses have been here for over 10 years and with Cedars doing about 100 transplants a year, they’ve seen a lot.
One thing I’m glad I know is that it’s very possible for the first offer to not go through. Although usually after you get the first offer, you usually don’t wait too long until the second offer comes.
The rejection of an offer can happen at any point in the procedure. Some people get to the point where they’re intubated, chest opened, and during the last look, a flaw or defect is found, and they shut it down. You end up waking up still intubated and sewn up, and they have to tell you that you still have you’re old heart. This extreme doesn’t happen a lot, but it’s not atypical.
It can take several (more than 2) offers before you get one that is successful. Each organ that is up for donation has a “back-up” recipient in case the primary recipient rejects the offer. There have been instances where the organ is more of a match for the back-up recipient, so it will go to them.
Along the same lines, sometimes someone waiting for 2 organs gets an offer, but rejects one of the organs, therefore the other good organ goes to a back-up. For example, if someone is waiting for a heart and lung and the lung ends up not being good, then the heart will go to the back-up patient.
It’s all really scary yet interesting, and to hear all the possible outcomes really helps me prepare mentally for this whole process. The nurses here are a wealth of knowledge, and they’re very open to explaining things if you just ask. One of them even showed me pictures of some of the successful transplant patients who came back to visit the ward after they recovered. It’s inspiring to see all of them happy, healthy, and smiling.
I’m looking forward down the road and still trying to walk steadily and focus on all the positive things that can happen. Thanks for being on the roadside handing me cups of water and cheering me on. I love each and every one of you.
A Summary of My Condition. September 13, 8:17 PM
Another day in the waiting game. It was a typical day, healthy and uneventful. Both good things.
I thought I’d use this post to let everyone know where I am now. Sort of like a little summary.
I am currently waiting for a heart transplant, and am actively on the list as status 3 of 5. Generally, the wait time can last up to a few months. It’s a relatively high status, as statuses 4 and 5 wait times are measured in years. Because I’m in Cedar’s, my wait time is expected to be less, as this hospital is a high traffic surgical unit known for the procedure.
I’m in great health (considering). I have a Swan-Ganz catheter in my left shoulder, and I’m on a constant drip of three medications which help my heart pump. They actually raise my blood pressure. My ejection fraction is still around 25% (what it was when I came in), so my heart is weak.
The three medications and the Swan-Ganz catheter is what got me to status 3 on the wait list (GREAT!). However that means I’m constantly attached to a rolling pole of medicine diffusing pumps and monitors (not so great). So when I walk, a nurse walks with me and pushes along my pole with medicine drips beside me. I’m tethered to the pole with wires and a tangled jumble of tubing leading to my chest and catheter.
Aside from the walks, I also get up and spend most of the day and evening standing, walking around the room (attached to my pole), and sitting in a chair for all my meals. I’m usually only in bed for procedures and to sleep. Doctors really like that!
I’m pretty much staying as physically and mentally ready for the big day that I get an offer. Waiting for a match is the only part of this that we can’t control, but the entire medical team is taking care of my physical health, and you guys are helping me so much with my mental health. On both counts, I’m ready!
Thank you and I love each and every one of you.
Our Medals of Strength. September 12, 10:59 PM
A few posts ago, I mentioned scars and how I have a great respect for them. When my ex-wife Myra had her heart surgery, I was always in awe of the scar on her chest, and how it represented her independence, her survival, and her triumph over Marfan. I loved seeing it peek out of her neckline at times. I think she felt the same way, but maybe not so extremely as I did. She was a hero of mine for quite some time.
I was so happy to have many friends who shared their scar stories with me after that post. Cutting scars, surgery scars, accident scars, all kinds. You’re all my heroes for the day. Wear your badges with your heads held high.
I had an idea for a time further in the future when I’m all healed. I want to have a Kintsugi party. Maybe for my birthday.
From an article by Tiffany Ayuda:
“Kintsugi is the Japanese art of putting broken pottery pieces back together with gold - built on the idea that in embracing flaws and imperfections, you can create an even stronger, more beautiful piece of art. Every break is unique and instead of repairing an item like new, the 400-year-old technique actually highlights the “scars” as a part of the design. Using this as a metaphor for healing ourselves teaches us an important lesson: Sometimes in the process of repairing things that have broken, we actually create something more unique, beautiful, and resilient.”
At the party, we could all share our scars and decorate them with with metallic body paint. We could also bring our own broken pieces and create our own Kintsugi art. We can celebrate how our “flaws” and scars can mend and make us more “unique, beautiful, and resilient.”Who’s in?
I love each and every one of you.
The Rest of the 75%. September 11, 9:20 PM
Another day of waiting, walking laps, and maintenance just ended and I’m back in the bed for the night. I spend all day from about 6:30am to 9-ish sitting up in my chair, walking around the room, and walking 2 laps around the ward. That’s pretty much my day.
I start breathing a little heavy during the laps, but I still have the muscular energy to do more than 2 laps. What I lack is the mental energy to keep “focusing”. I’m a little light-headed from both the medication drip and my very low functioning heart, so I always have to stop at 2 laps to avoid a serious fall risk.
In my room, I do an easy crossword now and then, visit with my Mom or Stacy, and complete hospital paperwork projects like planning meals for my recovery, getting doctor’s notes, and emailing/texting/calling people I need to contact. Oh, and I nap. I nap often.
I know this sounds like a boring existence, and many of you might think I’m going out of my mind being “stuck” here. But honestly, I’m doing pretty much what my oxygen craving body and 25% EF assisted heart can handle. I actually have to stop sometimes and just sit still for a while.
It sounds like I’m complaining, but I swear I’m not. I’m not frustrated, and I’m not filled with anxiety or worry. When I “just sit”, I focus on things like you guys, your love and support, the fact that my heart attack could’ve just been the end for me but I didn’t even notice it, all of which leads to so much gratitude.
Thanks to your support, my attitude is plain positive. I feel ready, not trapped. I feel bolder, not bored. My tired, blocked, little heart may be functioning at 25%, but your good will and energy with my good spirits fill it up to 100% each day.
I love each and every one of you.
Oh THAT’S What That Is. September 10, 9:50 PM
Congratulations, it’s a granuloma.
At least that’s what my Dad says it is, and with everything the doctors are saying it ISN’T, it seems like Dad is right.
Dr. Levine (pulmonary) came in this morning and told me that some people on the team are worrying a little too much about it, so he is having Dr. Gautier (infectious disease) come and set everything straight. He left me with a fist bump and no worry at all.
Later in the afternoon, Dr. Gautier came in and looked at Radiology’s assessment (which was pretty much a list of illnesses that I couldn’t possibly have - Radiology has never met or seen me). He asked me a few questions (required) and quickly signed off on “no infection” and said we pretty much have nothing to worry about.
They’re pretty much going to be just keeping an eye on it to make sure it doesn’t change. They didn’t say the actual words, “Congratulations, it’s a granuloma.” But according to their non-chalant attitudes and the “treatment”, it certainly seems like one.
So happy news! I have a little scarring on my lung from a previous tiny infectious battle in my lungs. I’m about to get a nice, HUGE scar on the outside, and now I know I have a little scar inside as well.
I’ve always been proud of scars. They are visual proof you survived and healed. Here’s to my matching set. You are all such a huge part of my healing. Thank you!
I love each and every one of you.
What is That? Thursday, September 9, 9:06 PM
I got the results from the CT scan today. Good news, the small ulceration in my right lung is healing like it should. Odd news, Dr. Levine saw more “things” at the bottom of my lung that weren’t there three weeks ago.
“Did some liquids go down the wrong pipe? You’re not coughing anything up?”
Yes, I have been waking up some mornings by my saliva going down the wrong pipe causing a coughing fit, but the coughing in general has still been dry. So he very kindly and supportively let me know that he and the team will take closer looks at it and try to figure out what they are, and what we need to do about them.
He didn’t refer to them as “masses” or “lumps” or anything, he very non-specifically said “mystery things”. And he didn’t seem worried, just puzzled. I’m sure I’ll talk to him tomorrow and find out what the next steps are.
Dear god, please no more “procedures”.
In better news, I did get to walk again today, and I did have a lot more energy.
I love each and every one of you.
Doctors and Scans. Wednesday, September 8, 9:01 PM
I’m still just waiting for a new heart. My favorite doctor on the team, Dr. Levine, keeps reminding me that they’ll take care of everything from the neck down to make sure I’m healthy and ready, and I just need to take care of everything from the neck up and hold on while we wait. It’s the only part we have no control over.
He’s my favorite doctor on the team because he’s always telling me things that are actually helpful and encouraging. Most of the other doctors just ask a bunch of questions that they should already know. I mean even the consistency of my poo is logged on the computer. If it’s not a bunch of questions, I get the “It could happen any time.” And I realize it could, but I like Dr. Levine’s approach. He’s so much more Zen about it. We control what we can to be ready, and when the time comes, we’ll be so ready that the recovery will be faster and healthier. Now that’s useful and encouraging.
Today he scheduled a CT scan for me to make sure the little clot/ulceration in my right lung is healing properly. He’s very confident that it is, but wants photographic proof. It went well, even with all my tangled mess of Swan tubing and lines to which I’m constantly tethered.
Tomorrow is another day of waiting.
I love each and every one of you!
That Was a Nap? Tuesday, September 7, 10:49 PM
Well, today turned out way different than I thought it would. I had planned on being so productive, and the whole day was gone in a series of naps. Of course, the naps were interrupted by vital checks, cardiac output numbers, meals, and a lot of peeing, I was mostly able to just go back to sleep.
One of the main things that make me tired are the magnesium drips. They relax me quite a bit (which is good for my back pain), and I feel tired and groggy. I’m only on 2 hours of delivery when I get it, but it’s still a lot of magnesium, and I tend to drift off. I even slept through my walk today, which is probably for the better since I felt very dreamy all day and that didn’t help my stability. I walked around the room a bit, but that’s it.
I got a few perspectives from friends out there last night and today regarding my Monster Cloud. I’m happy to say that the cloud is much smaller, and no longer a monster. Thank you everyone for your thoughts on this. I feel lucky that you guys are so brave as to share such difficult ideas with me.
Now I’m probably going to up for a while now. I’ll fill the night with many episodes of Forensic Files and maybe read a bit.
I will also sit in the bed feeling how much I love each and every one of you.
Just Waiting. Monday, September 6, 8:17 PM
It was like a ghost town in the ward today. A few interns and med students came by to check on me, but that’s it. When I took a walk today, there was hardly anyone in the halls.
Today was quiet. Nothing really new to update. Just waiting.
I had a great visit with my Mom today. As always a lot of laughs, and her telling me to uncross my legs.
Tomorrow I’ll contact my therapist again. She returned my call earlier, but I haven’t had the gumption to call her back yet. This is a first, as usually I’m looking forward to setting up an appointment with her. I think it’s the anxiety of opening up about my cloud monster again that’s making me procrastinate. But I will definitely reply to her tomorrow. Definitely.
I’m at least feeling peaceful right now. In the moment. Sitting in my thoughts about how much I love each and every one of you.
To Walk Or Not to Walk. Sunday, September 5, 7:45 PM
Yesterday was the first day that I took a walk with no support. Usually, I push a wheel chair in front of me because I’m a little light headed, and it stabilizes me. Yesterday, I just used the handrails every now and then along the ward hallways.
Today however, I didn’t get to walk at all. They decided to try lowering my Dobutamine (helps my BP stay up), but when they did, my systolic went into the 80s. So after a few hours they put be back to my regular dosage.
The doctor that came in to explain this to me said that it was mostly logistic, so they can prove that I actually need the levels of meds their giving me to stay Status 3 on the transplant list. So I guess to day was a good day, even though I was really tired all day and napped a lot. I actually napped through the end of Stacy’s visit. Ever supportive, she of course encouraged me to rest.
Tomorrow is another day of waiting. I got a few more suggestions for how to handle dealing with my monster cloud. They were all good ones that I plan to cover with my therapist. Thanks everyone! I’m starting to feel like I have more of a handle on this now.
I love each and every one of you.
An Entire Tube of Chapstick. Saturday, September 4, 8:37 PM
Have any of you ever finished an entire tube of lip balm? I feel like I’ve been applying lip balm about 10 times a day and my lips still get chapped and I’ve still yet to see the end of a tube. It’s like the little turn knob on the base is pushing up an infinite little waxy cylinder.
That’s kind of how I feel about waiting. I’ve done everything and gone through a lot to get to where I am now, but all that happens when I turn the knob is more chapstick. I know I’ll see the end of the tube eventually, but it just feels so endless.
This is a good thing, because I like smelling the watermelon/dragonfruit/mango smells, but at the same time, I’m thinking, “How long is this going to last?”
I thought more about the monster cloud this morning during my quiet time sitting in my chair, waiting for the sun to come out (and waiting for breakfast time). It felt like a good thing that I was still waiting in that no one has died yet. I still have mixed emotions about the end of the chapstick. When it finally comes, I’m hoping I’ll have more of it sorted and at least know where to put it.
My lips are dry. A few more turns of the base. I love each and every one of you.
Confusion Abounds. Friday September 3, 5:07 PM
I miss my therapist. This morning I called her and left a voicemail to make an appointment with her. I’m still trying to tackle this cloud. This morning I also signed a contract giving my consent to be part of a study. While the director of the study was wishing me well, he curiously said, “I have a good feeling about this weekend.”
“What do you mean?”
“Well, I think you’ll get a heart either Saturday or Sunday.”
When I asked what made him say that, He said that due to my frame, size, and such I would usually get a heart quicker than someone on the larger side. There are just more matches for people my size. I asked him why he was so specific about this weekend.
He said, “Well, it’s a holiday weekend, and people do more reckless things.”
I knew what he meant. He saw the look in my face and tried to back track a little. He was very polite as he left. Left me alone in the room, thinking about this monster again.
I’m still having a hard time looking at this directly, and now “getting a heart” is beginning to be associated with “someone has passed”.
Later in the afternoon, one of my previous day shift nurses was working, but I wasn’t his patient. So, I passed on a “Hello”. He later came in to chat and say “Hi”. He mentioned that one of his patients for the day was the same status as me (3) on the list, and just got a heart after waiting for 2 weeks.
He meant to tell me this to let me know that it could happen soon, but I couldn’t help but notice that I was very happy for the other patient, and actually glad that I wasn’t taking advantage of a dead person. I know that’s not what I’m doing, but it’s weird that I felt relief that it wasn’t me.
I’m not sure what this all means, but I’ll be happy to approach this with my therapist. Don’t worry if you’re confused, I am too. But hopefully not for long.
I’m Unremarkable. Thursday, September 2, 7:58 PM
This afternoon I got a visit from my GI doctor who told me the results from my colonoscopy. They biopsied the small ulcerations they found and they were all unremarkable.
I never thought I would love the word “unremarkable”.
Finally, I got the internal hold removed, so although I was never officially “taken off the list”, I was put back on the list as far as the hospital goes. They have me marked ready to accept a transplant if one comes along,
Stacy visited me today, and we got a lot straightened out. We opened a few Kaiser bills, talked about what I posted yesterday, and I shared with her that I would be making an appointment with my therapist tomorrow morning to discuss what I posted about yesterday. I don’t know what to call it. Survivor’s guilt doesn’t seem strong enough.
This thing is just really big and I think it will be helpful to have someone to guide me through it. My therapist has helped me through grieving and my own sexual identity crisis, and I’m sure she’ll be able to help me with this. I’ve also received a few very helpful texts from you guys that show me new and different perspectives. So thank you!
That’s only one of the many reasons why…
I love each and every one of you.
What Am I Waiting For? Wednesday, September 1, 8:15 PM
Today was a nice day. I got a visit from my Mom, and I even got rid of my month-old facial hair this evening. I waited for 3 full meals, ate 3 full meals, walked 2 laps, tried to manage more hospital paperwork, all things I usually do while waiting.
Waiting. Last night, I tried to take a closer look at something that I’ve been pushing to the back of my mind each time it bubbled up.
A while back, my transplant surgeon said I could possibly get a woman’s heart. I feel like I’ve always had a woman’s heart, but I thought, “That would be really great!”
Then, last night I was thinking of that when all of a sudden, for a very brief moment, I let myself go to the, “I am waiting for someone to die” place. I’m waiting for someone who didn’t, or won’t, get the second chance that I got. I thought about the person, I thought about their family, I thought about the fact that they won’t be a part of this world anymore like I will be.
I thought about how I didn’t even KNOW I had a heart attack. I thought about how lucky I am, and how serendipitous everything was to fall into place as it did for me. Then I thought about how it won’t be that way for the person whose heart will be beating inside my chest.
My living chest. Their living heart. I get to live, they don’t.
Eventually, I had to stop thinking about it because all roads lead to some sort of catharsis that I wasn’t ready for.
I’ve had people tell me, “I know someone who’s had a heart transplant, here’s their info…” but this is the stuff that I have questions about. I don’t know “your friend/uncle/neighbor/etc.” and I don’t know how comfortable they are with my vulnerability that can be quite gushing in the moment. I don’t know how comfortable I am letting it all gush toward a stranger.
Thanks for being my sounding board for something that is really difficult to bounce. I realize that reverberations from something like this can be quite uncomfortable. I also realize that this is just the beginning of this specific process. I really appreciate your friendship, your support, and even just your eyeballs reading all the words.
I love each and every one of you.

The Saga Continues

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OCTOBER 2021 POSTS

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Happy Halloween! Sunday, October 31, 7:27 AM
Happy Halloween everyone!
My favorite holiday! My numbers this morning were good, and everything is stable today. I’m not sure of my plans today, but I know I get to see Stacy, and I have a little pumpkin to decorate with Sharpies (thanks Timorah!).
Small miracle today, my PA line in my Swan worked twice in a row! So at the moment I have a fully working Swan. We’ll see how long that lasts! Hopefully until I get an offer.
Cuddling in my muppet blanket and heating pad, waiting for breakfast. I hope everyone has a happy Halloween! Text or email me your plans, thoughts, and general spooky joy. I love each and every one of you.
Until Next Year. Saturday, October 30, 10:48 AM
Today is the last day of Asexual Awareness week, so we’ll all probably quiet down again until next October. I hope all of you have a chance at some point to familiarize yourself with it, and to feel comfortable with the term. If you have any questions, I’m very open for discussion. I just don’t usually open it up myself because I feel like I always talk about it. I know I never do, but it feels like it’s always in the forefront of my mind, so I it feels like I’m always talking about it.
Thank you to all of you who have sent me texts and emails about when we’ve talked about it, or how you picture me in it. It helps knowing that part of me is actually visible at times.
I’m still waiting, but comfortable. Numbers and levels are stable, and my mood is good. Sleepy today, probably because of the chill and the rain, but nestled in my throw blanket (which feels like cuddling a muppet).
I will probably try to do something Halloweenie, and celebrate with the staff a little. They’re all super supportive and stop by my room to say “hello” when they can. One nurse gave me a Treat-no-Trick little package of gum, dark chocolate Milanos, and Haribo Gold Bears. Guess who’ll be munching away in front of “It’s the Great Pumpkin Charlie Brown” tonight! (I got a rock). I hope everyone gets to celebrate this weekend with their friends and families, or whoever is around, or even by yourself (that can add to the spookiness sometimes). I love each and every one of you. Boo!
Heading into Halloween. Friday October 29, 10:46 AM
Halloween weekend is here! Got my visit from Dr. Levine and he gave me his Friday Elvis pose pointing to the recovery ICU unit out of my window. He’s really is the best. Things are stable and I’m in a world now where as long as things stay the same, I’m ok. Things won’t actually get better until I have the transplant.
Still waiting for my first offer. It’s funny, I’m completely prepared to have to reject the first offer, but I know a second offer usually comes quickly. It’s November in a few days and I’ve been in the hospital since July. Crazy. My spirits are still good (thanks to you guys), and I still have an abundance of patience so far. Just trying to stay positive and looking forward.
I hope everyone has some great plans for this weekend. With my Swan issues, I’m mostly “on guard” and ready to go if they need me to. Hopefully it will be quieter because of the weekend, but you never know. NPO could be sneaking up on me like a campfire ghost. Hopefully not.
I hope everyone has a great Halloweekend! I will be thinking of the end of Asexuality Awareness Week, as well as spooky stories and movies. I’d love to hear what you’ve all got planned! Send me a text or email if you get a chance. I love each and every one of you.
Back to Stable. Thursday, October 28, 9:46 AM
My pressures are down and my levels are all good. It looks like I’ve stabilized. Feeling good, and trying to keep my back and neck pains away. So far I’m succeeding. Yesterday was rough, but both back and neck this morning are feeling much better.
We’re heading into Halloween weekend, my favorite holiday of the year. It looks like the hospital has some fun stuff planned for the staff. I’ve got my hat to wear which I love because it makes everyone laugh. On my walk, I’ll be waving to everyone with my bat wings.
I’m dealing better today with the waiting. Being in pain yesterday made me a little impatient. Luckily I had a lot of sleep and they reduced a lot of fluids from my body. I lost 4.5 pounds over night. It sounds drastic, but there are times when I’ve gained 3 pounds in one night as well. You may remember in one week I gained 11 pounds. So weight isn’t really an indicator of anything but fluid coming and leaving my system. My weak heart can’t pump well, so monitoring swelling and fluid build up is a large part of my life.
Still waiting, still trying to stay as physically active as possible. Still very appreciative. I love each and every one of you.
Ace week. Wednesday, October 27, 8:46 AM
More new residents this week! Awkward people walking in and asking the same questions over and over again. Now it’s “Dr.” Stephen Soo and “Dr.” I-don’t-remember. But they’re both awkward. Soo says “uh… lemme see…” a lot as he’s thinking of what to say to me. I try to make it as easy as possible to communicate with me, but they’re just so socially awkward.
It also doesn’t help that they just barge in without knocking and start talking. No matter what’s going on in the room. The nurses could be talking to me, or I could be talking to yet another resident. Doesn’t matter. They just come in and start their same line of questioning.
I’ve actually looked a resident in the face and said, “I am taking a shit.” After a few sentences, they realize I’m on the beside commode and turn around and mutter, “I’ll come back.” Yes, they keep talking. It’s like they have to gear up to enter the room and just start barking their questions.
Thank you for those that responded to me about my asexuality post. One of the reasons I decided to write about it is because this week is asexuality awareness week. Feel free to learn a little more about our spectrum. “Ace” week is always the last week of October. Interesting. The week of hiding behind masks and reveling in being something or someone else. We’re really good at that.
As always, the support I get from all of you is so felt and appreciated. I love each and every one of you.
Woo Hoo! Tuesday, October 26, 8:59 AM
Let me preface this by saying I just spoke with a RESIDENT. So I’m not sure how accurate this is. My Cardiologist has not yet come for his daily visit with HIS team of residents and NPs in training, so until I hear it from him, nothing is for sure. But, they are delaying my new Swan. They don’t see a need for the blood gas draws (the part that’s broken) with all the other draws and levels they’re tracking. So that’s good news. No upcoming procedures so far.
I bet you thought I was leading up to an offer for an organ. Welcome to my world of anticipation, disappointment, and the constant reminders from staff and so many unknowing friends and family who ask, “When is your new heart coming?” Yes, even residents ask me “What’s the schedule?”. It makes me instantly snarky when it comes from them. Residents should know better.
I wanted to touch base a little on what I mentioned in yesterday’s post. That alone feeling that I deal with (and have dealt with since 2013) is dealing with my asexuality. It’s something that is always lost in my identity. As close and as loving as many friends and family are, it’s something that’s usually forgotten about me, and I understand why. It’s a very unrelatable orientation. It’s this unrelateableness (?) that makes it so isolating. This is what I’m thinking I can explore more while I’m tucked away in a room all by myself just waiting.
It’s not that I’m expecting any external help or support with this. I already do get a lot of that in the best way I possibly can. But I still get asked if I date, if I want to get remarried, if I’m still looking for a relationship. When I’m asked these questions, I feel like the answers are obvious, and that makes me feel like asker doesn’t see the asexual part of me. BUT, I also am realizing that those questions could be coming from an unrelatable misunderstanding about what asexuality is.
I’m trying not to feel so isolated about it, but it’s hard not feeling that way when I’m literally the only one I know who feels this way. I actually love being who I am. I feel like I have a perspective that can be very safe and comforting to others. It’s part of my originality, and it’s the catalyst for a lot of my social attitudes and behaviors.
I’m obviously still working on it all. Letting it out like this helps a lot. Thanks for reading! I love each and every one of you.
New Swan for Me. Monday, October 25, 8:45 AM
Well, it’s a new Swan for me. A resident came in and said that most likely we’ll replace my Swan. This will be the 4th one. God I’ve been here a long time. One day I’ll get an offer and the process will start. I just don’t know when. It’s been such a crazy long wait that time feels like it’s stopped. I thought I would be in recovery by now, and so did all my doctors. Everyone seems surprised that I’m still here. Who knows when, but some day I’ll be back in the world again, out of this little fish bowl of a room.
I’ve been watching a lot of TV (surprise!) and doing a lot of crosswords, sudoku, and word searches. I’ve also been pacing in my room. You know, like a cartoon character hatching a plan. I never thought I’d pace back and forth, but when you’re tethered to a drip pole which is plugged into the wall, you get all the movement you can. In zoos, they say an animal pacing too much in it’s cage is a bad sign. Their mental state is not good. I think I’m doing ok though. I’ll let the doctors assess my mental state, but I feel ok.
In my “captivity”, I’m trying to exercise a little introspective exploration. There’s a part of me that feels alone, but it’s always felt that way, even before the hospital. Sitting in my room thinking about it is refreshing in that I have the time and capacity to do it, then when I need to be a little distracted, it’s nice having my puzzles and of course, the internet to browse. If I use this time wisely, who knows, maybe I can make my little world feel more expansive so I don’t feel so boxed in.
Anyway, I’m glad you’re all out there in the world. You all make me feel connected, even though I’m still stuck in a chair by a hospital bed. I love each and every one of you.
Half a Swan. Sunday, October 24, 6:25 AM
Well, they’re not even trying to draw blood from the PA line of my Swan anymore. This is usually done every morning around 5 AM when they do my numbers. This morning, they didn’t even try. I asked, and they said that there was no order for it. I’m not sure how to take this. It’s either going to be a very happy day tomorrow, or a very painful and hungry one. We’ll see if they put me on NPO tonight. Sometimes they starve me “just in case” they decide to go ahead with a procedure. Or maybe it will just be a CT scan to see what a chest X-ray can’t? Who knows?
I will note that no one from the cardiac “team” has communicated with me about this issue so far. The nurses (who perform the numbers procedure 2x a day) have been reporting the issue since about Thursday. I may bring it up with Dr. Levine when he visits on Monday.
It’s turning out to be a weekend of the Swan. That sounds like a horrifying movie. Perfect for the season. I love each and every one of you.
Night of the Swan. Saturday, October 23, 8:59 AM
Oh, what a confusing evening yesterday. I’m currently having recurring Swan troubles. There is a certain port in my Swan that they use to draw blood from a certain point in my heart (the PA line). This draw is used to measure blood gasses and it can only be done via this port. It’s important that they send this to the lab every day as it’s tracking how well my heart is working.
The last few days this port is randomly and mysteriously not drawing blood. At times it will either work perfectly with hardly any resistance, and other times it will just be 100% blocked and not draw anything at all.
They’ve looked at other indicators, and everything is ok so far, but yesterday evening was spent trying to get a blood draw. It usually only takes a few minutes, but we spent HOURS trying to reposition me, thumping my chest, coughing, turning my head, and an infinite combination of all these to try and get blood from my PA line. I was exhausted by the end, and we never got a draw.
I may have to have a FOURTH swan installed if they can’t get this to work, and it doesn’t help that it’s the weekend and everyone is off. The nurses and doctors seem positive as far as all the information we ARE able to get, so that’s something. But right now half the reason for having these wires coming out of my neck is useless.
Think positively for me everyone! I’m trying to stay on that side of the fence with you. I love each and every one of you.
Changing of the Post Times. Friday, October 22, 8:45 AM
There was no post last night. I was sleeping, and recently, when I can get sleep, I take it. I’m realizing that when I try and end my days writing, I’m also losing sleep time. I’m usually getting tired in the evenings, yet in the mornings, I’m wide awake by about 5 AM. So, I figured I would start posting in the mornings instead.
Yesterday was great, aside from having a few issues with my Swan again. But by this morning, they were yet again resolved. So I think we’re ok now, heading into the weekend. Numbers are good, Creatinine levels are trickling down, and spirits are still up.
Sleep. I miss continuous sleep. I sleep for maybe 2 hours at a time, then I’m awake for vitals, numbers, an extremely loud neighbor, or alarms. Sometimes even the helicopter landing on the roof next to me wakes me up.
I cannot wait until I can just go to bed and sleep, get out of bed untethered to any drip machines, and get dressed in regular clothes. I haven’t worn regular clothes in months. Just a hospital gown, disposable underwear (A GODSEND!) and to keep the chill away, girl’s leg warmers on my fore arms. Yes, I’m a 51 year old male with sloths, black kitties, or pandas on his forearms to keep comfy. Ms. Vangsness, you would be proud!
My Halloween decorations are quite the hit of the ward. It seems the nurses like my room because of the organization and the decorations. I get a little kick in untangling all my cords and either “figure 8-ing” them or “over/undering” them. Stage managers, we know how it is. That painful wince when you see someone just wrapping a cord around their hand and making all the kinks and looping permanent/worse. Or worse, when they just roll up a knot in the cord like it’s not there. Eeep.
I got to see Dr. Levine this morning for his regular Friday visit which includes his weekly Elvis pose pointing out the window to the recovery ward and a hearty “MONDAY!” This was also the first time he mentioned that my heart was “just getting weaker”. He had great news about all my numbers and levels, but he ended it with that phrase. It’s a sad thought that I hadn’t had before. But here’s to hoping I get a good offer before anything drastic needs to be done.
Thanks everyone for following along. I love each and every one of you.
Ready for Bed. Wednesday, October 20, 11:55 PM
I am wiped out today. I tried to rest as much as possible, but there were issues with my Swan all day, and I didn’t really have an opportunity to rest. We think the issues are finally resolved, but it involved getting a chest x-ray and a full tubing change.
So, I’m now resting finally, and about to doze off. I drank some tea and am now super relaxed. So that makes this a very short post for today. I’m about to doze off.
I love each and every one of you.
Rest and Sleep. Tuesday, October 19, 11:54 PM
It looks like my numbers went down yesterday after the team took me off the Milrinone (see Inotrope in the Glossary) The reason they did this was because every 2 weeks my Status 3 viability on the transplant list has to be justified. To prove I have to be on the meds in my drip, they take me off one, show how my numbers drop, and then put me back on them. Right now I’m back on the Milrinone, and my CI/CO are both back up, and my place on the list is secure again for the next 2 weeks.
Because they put me back on an inotropic drug, I couldn’t walk today. No walking in the halls for 24 hours after a new drug or a change in dosage of a current one. By tomorrow afternoon, I’ll be able to do my regular laps around the ward again.
Staying as healthy and as strong as possible is sort of challenging here attached to a drip, and on medicine drips. Listening and feeling my heartbeats is part of assessing whether to push on or to stop. If I feel like my heart is beating to hard and/or I feel like I’m not getting enough oxygen, then I stop. If I know it’s just tiredness in my legs, and/or my breathing is heavy but complete, then I can press on. Breathing through a mask complicates things a little more.
Generally, I just do 2 laps a day, but now I’m trying to do this twice a day. Sometimes things get busy, or I get too sleepy and I can’t do the second walk. Sleep is a big commodity here in the hospital. The longest stretch I can sleep is 4 hours, and that includes falling asleep. At midnight and 4 am, my vitals are taken and recorded. That’s my opportunity to sleep. The rest of the morning is full of numbers, bathing, doctor and resident visits, and room cleaning. Oh, and breakfast.
I hope you’re all getting all the rest and sleep you need and want. I took it for granted for the longest time. Now that I have to sleep on someone else’s schedule, and many times, those hours are interrupted by noise, I really miss continuous sleep. Here’s to catching some Zs! I love each and every one of you.
Gratitude. Monday, October 18, 11:57 PM
Numbers today are a little more off than yesterday, but still in a good range. CVP went up a little from 6 to 7, and CI/CO numbers went down a bit. No one is worried, and all is still stable.
I hope everyone is enjoying the fall! We got a little rain and lower temperatures here in Los Angeles. Even though I’m in a hospital room, I really relished my view out of the window. Now if it would just rain…
Spirits are still good. One of the many things I’m grateful for is the different forms of support that come from everywhere. From Halloween decorations, to texts sending love, pics, and updates, to emails sharing family stories, to messages of vulnerability that I’m honored to know, all of these are like little (and some big) moments of me not feeling by myself.
I honestly do well alone, but sometimes feel a bit lonely, and when I read/see these pieces of love and sharing, I feel so much more part of a bigger world of friends and family. Your connections are such a large part of my patience and outlook. I’m sitting here waiting for a heart, and I’m comfortable because of my doctors and nurses, but happy and peaceful because of you guys.
I really hope to return all this love to you guys some how. You guys deserve to feel it as much as I do. I love each and every one of you.
What’s a CVP, CI/CO?
Pob. Sunday, October 17, 11:56 PM
I just watched episode 4 in an HBO Asia Series called “Folklore”. It’s a short series from 6 different Asian countries based on a legend from each culture. They’re all spooky and fit the season perfectly.
Episode 4 is called “Pob” and explores what could possibly haunt a ghost. It’s pretty funny, and it turns out the only thing scarier than ghosts in Thailand is Americans. Really clueless Americans.
Each episode is in a different language, but subtitled. Highly recommended. I also just watched Squid Games and didn’t enjoy it as much because it was dubbed. The voice actors are really horrible. I do admit though, the story kept me engaged enough by the time I got to the third episode.
So far my numbers are even better than yesterday. My CI/CO is very good, and CVP is now below 10! They are still giving me doses of Bumex, but less often. I think they’re just trying to stay ahead of the game.
Feeling good, spirits are high, patiently waiting, and thinking about how much I love each and every one of you.
Numbers Are Getting Better. Saturday, October 16, 11:56 PM
CVP is almost back to 10! The team likes it below 10, so just a little more to go. The mild swelling in my legs is almost gone, and my weight is going back down. The Bumex and Metolazone are doing their job.
So, it’s the NLCS between the Dodgers (GO!) and the Braves. I watched the first game this evening and was really surprised to see 40 thousand white-washed fans still doing the “tomahawk chop” and “Indian” chant. Can we let those go? Every time it happened, it hit me like a big gong sound and a “ching-chong” chant. It made watching the game very awkward. Then of course, there was the salt in the wound in the ninth.
On a lighter note, I’ve been Halloweening up my hospital room thanks to some lovely friends who sent me some decorations! I put a few up, and will use the rest to decorate the staff trick or treat buckets that I’ll be giving out starting tomorrow. I feel so festive now watching my Halloween movies with little pumpkins and lights around the screen.
I hope everyone is getting to enjoy this holiday even if it’s only in small doses. I love each and every one of you.
Uh-huh-huh. Friday, October 15, 9:54 PM
CVP is a little high but ok. And CI/CO are good. Levels are fine as well. Still just waiting.
I’m trying to keep up my minimal water intake. It’s strange knowing I’m on fluid restriction, yet still having trouble drinking the water I’m supposed to drink. Sipping ice water and sipping tea are a daily thing now while I try to polish off about 1200 ml of water a day. It’s not much, but I still barely finish it each day. I at least drink 800 ml. All I have to do is think, “It’s either sip water or get a heart pump.” and suddenly I’m thirsty for a few seconds.
Dr. Levine came in this morning to give me my Friday pep talk. He’s happy with all my stats, and again, he mentioned that he hoped that when he got back on Monday, I would be on the other side of the 6th floor (which you can see from my room). Then he struck his weekly Elvis pose pointing out the window to the recovery ICU. He’s always a great spirit booster.
I’m going to be watching more movies and series this weekend. Any suggestions, email me!
Thanks to all the new people reading the blog and sending me texts! Just a reminder, I most likely don’t have your number in my phone, so make sure you let me know who you are in your text or email. I’ll make sure and enter your info.
I miss being with people at dinner, at events, talking, even sitting aside and watching everyone have fun at a NOTE party. Some day we’ll be able to do all that again. Some day. If I were Stephen Sondheim, I’d write a song about it. I love each and every one of you.
Maintaining and Halloweening. Thursday, October 14, 10:56 PM
Numbers today are good! Creatinine levels, CI/CO, CVP (see the handy glossary!) all maintaining appropriate levels for my tired little heart’s capacity. Still waiting in my optimum holding pattern for an offer, but I’m comfortable, active, and still thankful and feeling lucky to be here.
I’ve been doing word searches, easy crosswords, and (new to me!) Sudoku. Some friends sent me some things to keep my mind active as well. It feels very AARP-ish. Very Senior Blue Plate Special-ish, but they’re fun, and they’re working, and they’re distracting me, so I’m very grateful for them.
I’ve also been watching some Halloween movies to cozy into the season. I watched Trick ‘R Treat (one of my favorite anthologies), Hocus Pocus, Muppets Haunted Mansion (of course), and the mystery Netflix series Click Bait (recommended). HBO max even has a play list of Halloween themed Bugs Bunny cartoons, so I watched Hazel the Witch giving up Hansel and Gretel for rabbit stew. I love the little hairpins floating in the air when she takes off.
I haven’t worn my Halloween hat yet, but I probably will when I dole out the trick or treat buckets full of candy and cookies to the staff this weekend and next week. Nurses, CPs, even the maintenance staff have all lifted my spirits with their attitudes and care, so I wanted to share my favorite holiday’s festivities with them. One of the housekeeping guys chirps out, “Amigo!” when he comes in to empty my trash bins. It always makes me smile and respond no matter what mood I’m in. He’s only here for a minute, but with his one shiny greeting, he can make me forget whatever Resident just left.
I wish I could share my Halloween spirit with all of you guys too!
… BOO!
There. Best I can do for now. I love each and every one of you.
Glossary
Blue Origin Launch. Eeep. Wednesday, October 13, 8:57 PM
I watched the live space launch this morning on Discovery. We sent William Shatner into space on an autonomous rocket that is shaped like a large phallus. Why does Blue Origin look like that?!? Go ahead and google, “William Shatner Space Launch”. Apparently we sent Jeff Bezos on the first flight in the same shaped rocket back in July. It’s like we’re sending our wealthy white men up into the sky in 3D billboards. That’s some representation.
Oh, by the way, the technical genius of this autonomous penis rocket is so amazing. I watched the entire launch, separation, and both landings - the engine and the capsule. The technology is really is awe inspiring.
About the capsule landing, it was interesting that we lay out carpets for them to walk onto as they exit the capsule and are guided to their luxury vehicle for the trip back to “life”.
I guess if anyone really needs to leave the planet and look back at it in its smallness, it’s rich white people. Interviews with these guys before launch are all really uniting and could be seen as inspirational. I hope they can take their experience and really take it to heart.
I’ve always sought allies my entire life. On the playground, in the hallways, in the workplace, in the classroom. I have found them in every shape, color, and creed. Simply for safety, also for friendship, but very much to feel a little safer, a little more like I belonged in that space. Perhaps that’s why a lot of people of color already feel this unity that rich white folks need to see from space. We’ve incorporated the search for belonging into our daily lives, as opposed to the privileged who are born with an innate belonging.
My numbers are good today, and my CVP went from 13 to 11! Hopefully it will be under 10 tomorrow. Since I’ve been on Bumex it’s been slowly going down.
Thank you everyone for following me down this weird and miraculous road. I love each and every one of you.
A Short Tutorial. Tuesday, October 12, 9:27 PM
Physically, everything is better than yesterday. My numbers are back to normal (although my CVP is still a little high), the swelling is getting less, and they’re giving me Bumex more regularly to get rid of the water weight. Creatinine levels are still good.
I realize that I’ve been throwing out numbers and levels and have explained them through different past posts in the blog. I thought I would offer a small tutorial here just so it’s all in one place:
CVP - Central Venus Pressure
This is the pressure in an area of my heart. If it’s too high, it usually means my fluid is too much, and they need to give me more diuretics to get rid of excess fluid. I should be below 10 since my heart is so weak right now. Normal is usually 15-30 (I think).
CO - Cardiac Output
How much blood is flowing through my heart. It’s usually a number based on the size/weight/height of the patient. A shorter, small framed person may have a CO of 3, where a larger, taller person may have a CO of 5. It just depends on how much the heart has to pump to circulate everything through their bodies.
CI - Cardiac Index
The CI takes the cardiac output (CO) and formulates it into the height/weight of the patient to get a standardized number.
Creatinine
Creatinine is a by product of Creatine which your kidneys are supposed to filter out and expel in your urine. If the level is too high, it GENERALLY means your kidney functions are compromised, GENERALLY because they may not be getting enough blood.
NOTE: I stress “generally” because that was the assumption my residents were making when they tried to force a heart pump on me. Turns out creatinine levels can also increase if you’re dehydrated. I was dehydrated. I didn’t need a heart pump. Adding a little water to my diet helped completely.
My CI/CO numbers are good now. My CVP is a little high (13), but I still need to drink a little water to maintain my kidney function and keep them healthy. This paragraph hopefully makes total sense now. I’ve added a glossary page to the end of this blog and will keep adding to it. All the above terms are in there now. (See the link at the end of this post.)
Anyhoo, that’s how I’m doing right now. I love each and every one of you.
Glossary
Back on the Bumex. Monday, October 11, 9:03 PM
Well, My lower legs and feet had slight swelling this morning, then my evening cardiac output numbers were lower than usual, and my CVP is higher than usual. The world is turning upside down! Not really. My numbers may not actually be that bad. There may be a technical problem with my Swan catheter. They’re looking into it, and in the meantime, they’re taking extra blood draws for testing to make sure I’m ok. Thank goodness for the good ol’ lab.
Because of the swelling, I’m back on the Bumex for at least today. I’ve gained 10 pounds in the past week. Mostly because I’ve been drinking more water than I had been to re-hydrate, and at the same time, they stopped my Bumex. So I think a lot of it is water. P.S., my creatinine levels (remember those? The heart pump battle?) are fine now!
I haven’t changed my eating or exercise. We’ll find out more tomorrow morning when I’m weighed. I went from 130 last Monday, to 140 this morning. That’s still insanely low for me, but at the moment, I have no muscle like I usually do in my legs and calves. Today was a day of pooping and peeing, so hopefully my weight will not go up tomorrow morning.
Now you all know probably way more than you want to know about my digestive and cardiac systems. It’s all a matter of knowing why things are happening. I have a good figurin’ team, so I’m sure all will be ok. In the meantime, Go Dodgers. Screw you, Giants.
I love each and every one of you.
A Gift. Sunday, October 10, 9:46 PM
My second day without Bumex was just as good as the first day. And just like yesterday, they gave me an evening spot dose because my pressures were a little high.
So all is the same, still waiting patiently, and still getting physically and mentally ready for the transplant. I had a new resident today (yeah, another one), and he made a jest about the holiday weekend “being great for accidents and recklessness”. I know I’ve worked through a lot of my issues with this, but I still don’t like to talk about people dying so that I can get a heart. Even though it doesn’t have the same effect on me, it still makes me feel uncomfortable. I like to think of it the way my friends and family have framed it for me, as a gift. Not as someone’s death.
I pretty much don’t say anything. I usually just let it pass, then sit with the bad taste for a bit, and then move on. If it’s a text or email, I delete it so I don’t see it again. If it’s an in person encounter like above, I let my reaction sort of speak for itself, and let them walk out of the room in an awkward silence.
I’m good with encounters like that now, but I’m still very sensitive about it. So please, when you’re texting or emailing me, please no jokes or associations between death and my new heart. I know it’s meant to be supportive, but it really hurts more than helps. Feel free to associate my new heart with a gift instead.
I love each and every one of you.
Staying Golden. Saturday, October 9, 11:56 PM
For a first day without Bumex (a diuretic that makes me pee), today was ok. They ended up giving me a dose this evening because my fluid intake/output was still too much on the positive side. That’s me, always on the positive side!
Other than that, today went well. My walk was much less tiring than yesterday’s, and the nurses say my levels are maintaining. It’s the weekend, so things are on the quiet side, and it’s mostly just resting and exercising. I usually get up and move around the room a lot aside from my daily walk. I’m tethered to my drip line pole, which is plugged into a wall, so I can’t really move that far, but I make do.
On the mental side of things, I’m still holding on, and I’m still happy to be waiting and comfortable. I’m so comfortable that I’m gaining weight. In the last week I’ve gained about 7 pounds. It’s probably from the extra water intake, and the fewer doses of Bumex, but it feels good to be putting on some pounds as they monitor me to make sure my pressures and levels are still ok. I feel like I’m getting more of “me” back.
Today I visited with Stacy, and she delivered a couple sah-weeet gift bags from my Haugh family (work) which had Golden Girls swag (Yes, I will STAY GOLDEN!) and a handmade photo album with pictures old and new from and with all my family there. It is SO amazingly touching and appreciated! After Stacy left, I looked at the album over and over again. I miss work. I miss my Haugh family. I miss everyone! I love each and every one of you.
Sing It Debbie Deb. Friday, October 8, 9:23 PM
Look out weekend
<ba-dubadub>
Here I come
<ba-dubadub>
Because weekends were
<ba-dubadub>
Made for fun…
Anyone? Debbie Deb, classic 80’s dance hit? I’m ready for the weekend and any offer that may come my way. From my room I can see the helicopter landing and taking off from the helipad, and I hadn’t heard it in a while. This week I’ve been hearing it both during the day, and late at night/early morning. It makes me feel like the world is still out there, and the list that I’m on is slowly getting filled, and that eventually my time will come.
Dr. Levine visited today and wished me a good weekend. He hoped that on Monday, I would be directly across the courtyard in the OR recovery ICU, and pointed dramatically out of my window, posing like Elvis. This is why he’s my favorite doctor here.
The crack Cardiac Team also visited and said that my creatinine levels are good, and that I’m heading in the right direction. Not a word about a pump today. It’s late evening, and they haven’t issued an NPO order or anything, so it looks like I’m cleared for the weekend.
I will be waiting, visiting with Stacy, and watching a lot more Halloween stuff on my new Kindle Fire. They were on sale at Target, and I couldn’t help myself.
The weekend. I hope you’re all going out, having fun, and being in the world (socially distanced and masked of course). I miss going out. I miss having normal strength. Today’s 2 laps around the ward were a little tough. I was tired, and my legs ached more than usual after the first lap. I had to be careful because when they’re too achy, they can give out on me. I made it through though, and will continue to do so over the weekend. I’m promising myself that.
Jumping music -
<ba-dubadub>
Slick DeeJays -
<ba-dubadub>
Fog machines and
<ba-dubadub>
Laser Rays
Look out weekend!
I love each and every one of you.
A Calm Day of Waiting. Thursday, October 7, 11:35 PM
Yesterday was so full of feel-good news that today was the first day I wasn’t on NPO the night before, Food & Nutrition got my orders (kind of, I still had to call, but I still got the right meals), and there was no mention of heart pumps from the gaggle of residents that visited today.
Yes, there was still a lunar ton of residents today.
But, I had a very relaxing day, got in my regular walk, and spent the evening trying to figure out with the nurse how to order Halloween treats for the staff.
The nursing, CP, and even housekeeping staff have all been so nice and supportive through every single issue I’ve had here. They actually mentioned how much they like me and my visitors. They are constantly giving me incredibly positive encouragement. Some Halloween candy and cookies are the least I can do. When I say I have 2 advocates in Dr. Levine and Amy, my social worker, I should also be including the staff of the 6 South Heart Failure Ward.
I really would like to wear SOMETHING Halloween-y every now and then this month just to celebrate the season. I got a few cheap things on Amazon to wear, so I think that will do. I don’t want to have to much stuff here, because anything that’s here in my room has to either be thrown out or packed up quickly whenever I get my donor offers. After I’m whisked away to the surgery, I’ll wake up in a different room in a different wing. But I think a cute hat and a pin can fit in my back pack pretty easily.
I hope everyone is celebrating this spooky time of year. I wish I could be out there carving pumpkins, eating candy, watching movies, and marveling at kid’s costumes with all of you, but there’s always next year.
For the record, my numbers are good, the re-hydration strategy is working well, and my mood is much much lighter and more positive than earlier this week. Thank you for helping me get through it all. I love each and every one of you.
So, Here’s the Tea, Hon. Wednesday, October 6, 11:24 PM
SO, you know how there’s been this struggle for me to be heard in this so-called team decision to install a heart pump, and I been self-advocating and stuff, y’know? WELL, get this:
This morning Dr. Levine, my absolute FAVE doctor on the team who HAPPENS to be in charge of continuity of care, so he’ll HAPPEN to be with me for my ENTIRE PROCEDURE - thank the baby jebus and his shiny golden head-hoop - Anyways, I update him on how I been feeling a little confused with their approach since they ain’t been answering my questions that clearly and all. So he says,
“I totally agree with you and your dad’s idea of trying to drink more water and reverse the dehydration a little before going all-in with a heart pump. Whadda ya say I talk to them ‘cuz you know, they’re kinda scared of me… Why are you laughing?”
I says, “Because I absolutely love chatting with you and can’t imagine you scaring people!” I says.
And he says, “Oh yeah, but I’m not scared of confrontation. Yeah, I’ll talk to them.”
Then I says, “Thank you Dr. Levine! You’re the only one around here that actually hears me lately and all!”
Then he says to me, he says, “It’s always good seeing you, Gene.”
It’s always good seeing me. [Sniff]
I about ripped my heart out and wiped his shoes with it as he left, it touched me so much. If I weren’t attached to this big box of tubes and wires, I just may have. You know how I can get.
It’s always good seeing me. Ah! Doctors.
…and scene.
More “Tea”, I also chatted with my social worker, Amy. She validated my feelings and actions 100% and was so encouraging. It was really great talking this out with her. Another good listener.
I love each and every one of you.
Maaaann. Tuesday, October 5, 11:59 PM
Hello all, no update for today. A lot going on, but nothing transplant oriented. Battle Royale with doctors and residents. Update tomorrow…
I love each and every one of you.
The Smell of Stink in the Morning. Monday, October 4, 11;57 PM
So the mystery procedure I mentioned in yesterday’s post is a heart pump. It usually goes in through the femoral artery in the groin, and you can’t move/bend your leg, sit up, raise your head, or pretty much move as long as it’s in. Getting one means that I will be bed ridden until I get an offer. I will also have to lie flat 24/7.
I went through this for 6 days when they first installed one after my angiogram on August 6. That’s the day that I found out that I needed a transplant. Those 6 days were so unbearable. I had so much night time anxiety, not being able to move. It’s like claustrophobia. Like wearing a straight jacket. Because of the lack of motion, I also had neck and back aches. My appetite was not that great because I avoided food intake in order to avoid using the bed pan. Which lead to constipation.
Honestly, I can’t imagine spending the rest of my wait time in this condition. I will be in worse shape before the surgery, so my recovery will be more difficult. I was trying to stay active, move around as much as possible, and get as healthy as possible in preparation for the transplant surgery. Now I feel like all that is for nothing. Now, I will have been bed-ridden for weeks (at least) before hand.
There is talk that because being dependent on a machine will raise me to status 2 on the donation list, my wait time will be shorter. But honestly, my place in line is not the issue. I’m currently status 3, and there have been people in the same status who have come and gone since my stay here. My issue is my blood type. SO, the status 2 position, in my opinion, won’t really help me. I’ll just be waiting longer in a bed-ridden, compromised and painful state.
I feel like I’m being totally left out of this decision by the medical team. I’ve always been told that my numbers are good, then last night, the nurse just tells me I’m on NPO (no food, no liquid) at midnight “just in case” for the procedure the next day. That’s how I found out I’m getting a heart pump. It didn’t happen today because the team never met with me. They eventually let me eat lunch and dinner. Then tonight, I got the same order. I’m on NPO again as of midnight “just in case”.
The only person to come talk to me after several requests from my nurse was a resident. And you know residents are a waste of time. They are basing their decision on my creatinine levels which are a little high and indicate that my kidneys are not getting enough blood flow. What I would like to tell them is I believe I’m dehydrated from following their rules about fluid intake. I believe I have all the symptoms of dehydration and should try drinking my allowable fluids for the day to see if that helps. Yes, dehydration will also cause a creatinine level increase, and I have all the symptoms of dehydration.
The resident barely heard me and another NPO was issued tonight. Apparently what I think just doesn’t matter, and I’m not worth coming in to talk to before the procedure. I’m sure I’m reading into this negatively because of my mood, but that’s how I feel based on what’s happening right now. I’ve also never experienced a resident roll their eyes at me while I was talking. He then launched into some sort of explanation of something which I didn’t really hear because I was shocked and angry. He also kept trying to talk over me.
We’ll see what happens today. The NPO orders don’t allow me any liquids or food, so of course, my creatinine levels will increase again because of these orders, and my idea of trying to drink my allowable 1.5 liters of water per day isn’t even worth discussing.
So, that’s where I am right now. It’s hard staying positive when you’re being ignored like this. When you’re trying to help your own body, but the doctor’s orders aren’t letting you. When you’re not being heard.
I will be raising an even bigger stink in the morning. They better be ready for a really stinky stink that stinks so much that they can’t ignore me. If I’ve learned anything in all this, it’s that there are times to be a good, obedient patient, and then there are times when you have to advocate strongly for yourself, even if your tired and already fighting to stay positive. I’ve proven that I can do the former very well. Hopefully I’ll also learn that I can do the latter. I love each and every one of you.
Ugh. Sunday, October 3, 11:59 PM
I’m a little upset this evening. Waiting to meet with the cardio team about a possible procedure I don’t want. I will update you after the meeting. Whenever that is.
I’m on NPO (no food or water) as of midnight tonight just in case. Great.
Any Tips? Saturday, October 2, 2021
Nothing new to report right now. Just keeping my patience and sanity while I wait for an offer. My cravings for outside food are getting more noticeable. Anyone have any tricks to help deal with that?
Thanks everyone, I love each and every one of you.
Spooky Season! Yay! Friday, October 1, 11:56 PM
It’s the start of a new month. I’m waiting and ready for my first offer. There’s not much to tell in this update, but as the doctors say every morning, “Nice and boring is good.”
I’m reading, listening to books on audio, doing easy crosswords, and making lists of things to do in recovery. I’m also walking every day, and trying to keep up the little physical strength my heart allows.
It’s the beginning of my favorite season, so I’ll also be watching scary movies on my computer. If you have any favorites, make sure and email or text me titles. I have some time to check them out! What if I have a Halloween transplant and it turns into some ghost story plot!
Halloween transplant plots and scary movie/series titles: send them my way!
I love each and every one of you.
…Boo!

Let’s Keep Going, Shall We?

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NOVEMBER 2021 POSTS

Direct link to this month’s (November’s) posts:
https://msha.ke/jjbarrera/#november-2021-posts

SWIPE LEFT FOR DECEMBER’S PAGE.
Free of All Attachments. Tuesday, November 30, 5:21 AM
I just had the last tube removed from my chest. It wasn’t really even in my chest, it was in the dressing on the incision site just keeping a slight vacuum pressure to keep the skin sealed. It’s called a Wound Vac, and the other end of that hose is attached to a small vacuum which I had to carry around. Until now. The incision looks like it’s healing so well. No more bandage on it. Just in open air to heal.
Today from 10:00 AM to 3:30 PM I have teachings all day about food and nutrition, after hospital home care, and future appointment and home care visit schedules. I’ve got my trusty note book ready, and I’m sure I’ll be getting a lot of handouts to take home.
Then, providing the blood cultures they took yesterday come up negative for infection, I go home. Well, to the recovery condo. Which is just as good right now. If all goes well, I will be able to sleep in a normal bed. I will be able to wear normal clothes. I won’t have to tie a gown for a long time.
I will also miss all the nurses and doctors that took care of me. I am so filled with gratitude for all they did for me, (and all their patients), and how they truly put the “care” in health care. I honestly and humbly felt cared for. Not just as someone waiting for a heart, but as a real person with emotions and thoughts. They truly care, and it made this journey so much less lonely than it could have been.
Your support was also so instrumental to my recovery. I never thought I would literally feel support until the last few months. People can say what they will about the digital age, but your texts and emails were so much more than just words on a screen. They were a lifeline and connection to the outside. And boy did I need and rely on that quite a bit. I will always be so grateful for all of you.
The donor and their family. There are no words that could encompass how much I think about them. In yesterday’s post update, I mentioned seeing the gift they gave me for the first time during my echo, and being so overwhelmed with emotion and gratitude. I got to see their loved one’s heart pumping healthily and strongly in my chest, while feeling every beat. It is truly a gift, and I promise to be the best steward to that gift that I can be. Everyone calls this entire process and my quick recover a miracle, and I agree. That family and donor are actual miracle workers. They are my miracle, and I will always be grateful and full of love for them.
I love each and every one of you.
My First Biopsy. Monday, November 29, 2:16 PM
UPDATE: 4:22 PM
I just had an echo to make sure there was no fluid build up around the heart (all clear!). I got to see my new heart for the first time and was overwhelmed with emotion and gratitude. I kept thinking about the donor and their family and kept repeating “Thank you.” I am so lucky. Still crying with joy.
Original post:
Well, it was a great Thanksgiving weekend followed by a great Monday. I just got back from my first biopsy. I’ll have one weekly for a month, then they’ll slowly taper off. The immediate results are good. They told me all the numbers are good and my gift is pumping and working fine! Of course, they haven’t yet analyzed the tissue yet, but hey, good news is good news, and I am happy.
Some dangerous news: I discovered the joys of the Deluxe menu here at Cedars. It’s all cooking from scratch, and it’s actually really good. After four months of standard kitchen hospital food, I need the change. It’s a bit pricey, so I’m going to put a tiny dent in my available credit. It’s definitely worth it to me. It’s good food that is still on my cardiac/diabetic diet since they cook it all from scratch and they can make the appropriate adjustments.
I’m sitting here waiting for my first meal of the day - from the Deluxe kitchen - and thinking of all of you and the thought of getting out of here some time this week!
I love each and every one of you.
A Few Sleepless Nights. Sunday, November 28, 10:24 AM
Only about an hour of sleep each night for the last two nights is not fun. Right out of transplant surgery, one of the main drugs is a heavy dosage of Prednisone, a steroid. It whacks out my blood sugar, and gives me insomnia. What’s odd, is even with that negligent amount of sleep, I’m not sleepy during the day either. Which is good, as I can still keep up with my three walks a day which helps me quite a bit.
They’re already lowering my dosages of Prednisone now. I’ll be on a much lesser dose once I leave. I’m leaving. So far we’re still no track for Tuesday, the day after tomorrow. The. Day. After. Tomorrow. We’ll know better tomorrow after my biopsy.
I realized this morning that exactly 4 months ago, I made my way to the ER, and was admitted to the hospital. And I’ve been here ever since, only experiencing the outdoors through ambulance and hospital room windows. Then just last week, I got a new heart.
I’m feeling stronger each day, but I learned just now that the reason I’m still breathing heavily when I walk is because of my new heart. My entire chest cavity is still healing, and all that will come back as I exercise and heal. I was wondering why even with my oxygen saturation always being 100%, I was still breathing heavily with just slow walking. Now I know. Time and healing. And walking. I’ll get it all back soon.
At least at night, I’m getting a lot of Christmas shopping done. I’m actually looking forward to decorating the healing condo, and wrapping all the gifts as they arrive from Amazon. I’m also looking forward to sending out Christmas cards this year. I’m going to be doing all I can to get connected with all of you again.
I love each and every one of you.
Looking Back, and Feeling Stronger. Saturday November 27, 10:14 AM
I just had the team visit me (well, it’s Saturday, so one of the team), and I am healing really well. If things keep going the way they’re going, I will not need a pace maker. My new heart seems to be waking up steadily. We’re still scheduled for a biopsy Monday, and main teaching Tuesday with possible discharge afterward. It’s so nice to be so close to the end of the tunnel!
From my recovery room, I can hear the helicopter again. Every time I hear it, I think, “Oh someone else got their organ!”. When I was in 6 South waiting for months, Each helicopter flight was a reminder that I was still waiting, and that there were others in front of me still. Now being on the other side, I’m much more comforted by the sound.
All is set up and reserved now with the recovery AirBnB. Mom will be flying in Monday so that she can attend the big teaching on Tuesday with Stacy and I. Hopefully after that, I will be discharged, and we will be heading to the recovery condo.
Looking back, I’m realizing how many needles, catheters, wires, tubes, and procedures I’ve gone through every week. The past few months have been quite surprising and invasive. However, I’ve been grateful for it all and the direction it all pushed me toward. I’m also realizing how many more pokes, prods, catheters, needles, and procedures are in my future. But you know what, I’m just as humbled by them as well. I’m finally on the road to recovery, and I can finally say, “I feel good.”
I love each and every one of you.
A Rough Night. Friday, November 26, 9:34 AM
Last night started great with a nice wash cloth bath and gown change before bed. But then all of a sudden I had some quite severe bleeding from one of the sites where a chest tube was removed, as well as where my heart pump was inserted in my shoulder. It would bleed every time I coughed and soak the bandages.
We went through several bandage changes, then my nurse tried a pressure dressing and that seemed to do the trick. I even coughed a bit last night and it ended up ok. The surgeons took a look at it this morning during their visit, and it seems to be ok. They didn’t seem to be worried about it.
Some good news, I’m finished with my Dopamine drip which was my last one, as well as my ATG which was a very strong peri-op steroid drip. So, today they will remove my IJ quad (4 ports inserted into my jugular, “Inter Jugular”). All that I will have left now is my pace maker wires and my wound-vac tube which is helping my surgical incision heal. That won’t come out until I leave.
My pace maker is still keeping the rhythm of my heart regular, but they’re slowly turning it down day by day. Tuesday it was set to 100, Yesterday they dropped it to 80, and today they dropped it to 74. It’s on it’s way down. The doctors say it’s headed in the right direction, and everything else is going splendidly. I’m doing 2 walks a day, and today I’ll try and do three if the nurse has time.
I’ve been thinking about how thankful I am for my new heart, but I’ve also been thinking more about the donor’s family. I realized that we’re entering the holiday season and this is will be their first holiday without their loved one. I keep trying to send out anonymous love and gratitude in hopes they have some comfort. I think of how the gift from their family member will enable me to spend my mother’s birthday, Christmas, and New Years with my Mom. I don’t usually get to do that. We’ll get to spend time together in the recovery house as I recover from receiving their loved one’s gift.
I hope everyone is enjoying their holiday weekend, and can enjoy the holidays this year. I’m going to be experiencing many bitter sweet moments of quality time with family and friends, and having these times remind me of what my donor’s family is missing. Please try to relish what you can this season and carry this weekend’s gratitude throughout December and into the new year. I wish you all the best, and I love each and every one of you.
Very Thankful. Thursday, November 25, 7:49 AM
What a Thanksgiving day this year. I may still be in the hospital, but to be the honored steward to a new heart is a large part of my gratitude. I thank the family of the donor, the donor, and the teams that brought me the heart as well as placed it so skillfully into my chest. I’m also really grateful for your support and all the texts and emails you’ve been sending me. I haven’t been able to answer all of them, and that’s a regret, but I am super appreciative of all the strength you guys gave me to get through these past few months.
Everything is going really well. I’ve had 2 of my 3 chest tubes taken out, my Foley catheter removed, and today I’ll probably get my last chest tube out. My dopamine drip was turned off last night, so I have no more 24 hour drips. They’re keeping my Quad in (it’s 4 ports that access an artery in my neck) because I’m still getting some medicines through it, and they’re taking blood draws from there as well.
All the doctors and nurses are still amazed at how well the recovery is going. It’s good to feel like I’m on a fast track since I’ve been waiting for so long and preparing for this time. All the walking and exercise I did seems to have helped a lot.
Once again, thank you everyone! Have a happy Thanksgiving. Be thankful for your family and the time you’re getting to spend together today. Take a nice deep breath of air outside for me, and enjoy the day. I haven’t been able to go outside for 4 months! I love each and every one of you.
Three Days In. Wednesday, November 24, 7:21 AM
Yesterday was another eventful day. After running on no sleep the night before, I got some great news! At 11:00 AM I was transfered out of ICU into the recovery unit 6NE. That’s less than 48 hours after getting a heart transplant. Everyone here seems amazed at the speed of my recovery. I had several nurses in the ICU pop into my room just to tell me how great I looked when they saw me do my first stroll around the ward on Monday. It’s been a long, long wait, but I feel like I’m finally on the other side.
My sister booked my recovery Air BnB, and my mom will be arriving Monday to set it all up and get settled as one of my care givers. I’m ordering my food from Bistro MD today for my first week so that I don’t have to worry about cooking and my dietary needs. It’s all rolling along and I can finally see the end of the tunnel.
Having a wonderful night’s sleep last night also has a lot to do with it. Here in the regular ward, I have a smaller, quieter, private room and they close the door! My night nurse, Josabeth, also understood how valuable sleep is, and let me sleep in HUGE blocks at a time. At one point I think I slept from 11:00 PM until 5:30 AM, with extra sleep before that.
The schedule that the medical team is expecting is Monday, biopsy, with a possible Tuesday or Wednesday discharge date. I believe we’ll have a big “teaching” day on Tuesday. Medicines, Doctor’s appointments for the next year, and individual talks with different teams like food and nutrition, my endocrinologist (diabetes), and others. Then, it’s off to the recovery home for a month and a half.
Thanks everyone for following me on this journey. I do plan on keeping up with this blog for a bit longer, but I wanted to tell you your support has been so instrumental in getting through all of this. I can’t tell you in words what all your texts and emails meant to me. You really filled my heart with hope and fortitude. Those feelings were transplanted into my new heart so I’ll keep them with me. I love each and every one of you.
No Rest for the Weary. Tuesday, November 23, 5:53 AM
So my first and second night with the new heart held no real sleep at all. Sunday night the intubation sedation and all the surgery drugs helped me sleep, but tonight, I was up every 30-45 minutes with blood draws, medications, and even diuretics. My night nurse calls this “sleeping mostly through the night”. He doesn’t realize that I can’t sleep through the talking outside my room (the charge nurse has the thickest and LOUDEST island accent and talks constantly about nothing important). The night nurse bangs the lid of the trash can each time it’s opened. He also leaves the room with the light on which I have to turn off with the remote when it eventually wakes me up. It takes me about 10-15 minutes to fall asleep again, which means I’m getting about 20-30 minutes of sleep every hour. I don’t know when I will be able to sleep through the night again. It’s horribly depressing and I’m in a bad mood.
It’s almost 6:00 AM now, right about the time when things start getting busy. I’m already in the chair because I figured, why not? I hate that horrible bed. My back and neck tension pain are increasing, and I can tell it’s going to be a rough second day with a new heart.
Medically, everything is going really well. Everyone is impressed with how fast my recovery is going. Aside from my night nurse who balked at me only walking one lap yesterday. He was the one that was here when I was wheeled in from surgery the night before, so it’s not like he didn’t know I JUST got a new heart.
Recovery is going to be a harder, slower road today since I didn’t get any real sleep last night. I’m going to be dizzier, less stable, and on more pain meds than usual because of my back, neck, and chest tubes. It’s still painful to breathe, and that’s not helping my mood right now.
Even at this very second, he’s administering some sort of medication or flush. I don’t know what, since he never tells me, I have to ask.
Well, here’s to a rough morning and rougher day ahead. I will try and hold on to the idea of how much I love each and every one of you to get me through.
Success! Monday, November 22, 3:14 PM
I am the new steward of someone’s heart. (Thank you Kirsten for that term!) I am feeling really sleepy because they’re giving me Benedryl daily. I never take it because it makes me sleepy for days. But this is accompanying one of my strong peri-op anti rejection meds, so I don’t really have a choice.
That hasn’t stopped me though! Had surgery yesterday from 12:30 PM until about 8:30, was admitted to ICU at about 9:30 PM, and then woke up at about 4:00 AM with a breathing tube (which they warned me about). The breathing tube was removed at 5:30 AM. I got up and into the chair at about 11:00 AM, and took a short walk around the unit at around 2:30 PM. Now I’m back in bed, and I’m waiting for a vascular procedure to check for blood clots. After that, I’m done for the day, aside from my dinner.
I still have constant pain, but it’s manageable. It hurts to breathe because of the ribs still healing, but I’ve already started the breathing therapy sucking apparatus to help extend my lungs to normal capacity.
It’s been an emotional and thoughtful ride. All of you know I don’t subscribe to any religion, but I respect others religious beliefs. Recently, a meme was shared with me, “It seems that people who tell me hate the sin and not the sinner get upset when I reply with hate the belief, not the believer.”
I’m finding more offense to religious reactions to my transplant. When people respond, “Thank the Lord” and leave it at that, I immediately think of the person who had to die to give me a second chance at life. I think of their family. I think of what it would be like if my family were given the news that I couldn’t get a heart in time. I also think of the expert team it took to find the heart, and the home team here that so skillfully transferred it into my chest. I think of all these things and real people before thinking of any god.
It’s only really in this specific case because the sacrifices made so that I could become the steward to this new heart were so severe. I want the right people to be thanked, not a god that I don’t necessarily believe in. But still, I will accept those wishes as loving congratulations from the heart of whoever sends them. I know that’s the spirit in which it was delivered. But I still see it as an act done for the sender, not for me.
I’m on the other side of this! And I love each and every one of you.
The Moment Has Come. Sunday November 21, 12:14 AM
Super early post today. Yes, the moment has come. I’m scheduled to be in the operating room at 12:30 pm today. It’s after midnight, so I’m now on NPO. It’s the first time ever that I’ve been ok with those letters.
I got a call yesterday evening at around 9:15 PM from the Transplant Coordinator saying they have a heart for me, and the initial imaging looks good. Of course, it won’t be fully approved until the surgeons see it in person, so the offer could still be rejected. Nana, the coordinator will call me if it is. Otherwise, I start the 8 hour surgery at 12:30 this afternoon.
I’m feeling scared, I’m feeling excited, and there’s a lot of that cautious joy I mentioned before. It is not atypical for first offers to be rejected, but generally a second offer comes soon after if that happens. My nurse tonight, Destiny (I know, appropriate, right!?!), sat with me and answered all my questions about the surgery and recovery time afterward. She talked me through the intubation process, the pain management, and other things that came to my mind. It made me feel a little more comfortable about tomorrow, and what’s to come.
Obviously, if the offer goes through, I will be on radio silence for the next few days. I won’t be conscious until they can take the breathing tube out and I can walk around. That usually happens the day after surgery, but if there are complications, it could be longer. So, blog updates will pause as of now, and hopefully by the next update, I’ll be typing with my chest embracing a new heart.
So keep checking back here. I have a great team who has done this many many times, and I also have a great team out there in all of you. Thank you so much for all of your support and love, I have honestly felt it and it has been so helpful. Until I’m conscious again! I love each and every one of you!
Nothing New. Saturday, November 20, 9:26 AM
I usually try to wait until I get a visit from the team before I post, but I forgot it’s the weekend, so there’s not really a visit.
There’s nothing really to update. Just waiting, and realizing that it’s Thanksgiving weekend next week. I’ve been in the hospital since July. It’s pretty shocking how long the wait has been so far, and how never-ending it feels. I know I said I’m on deck for the next heart that matches me, but the wait is still here, and undetermined. Now is the time I wish I could just sleep away the time and wake up in recovery.
I hope everyone has a great weekend. As always, do something fun and text or email me about it. I do love hearing about the outside world. I love each and every one of you.
On Deck. Friday, November 19, 6:31 AM
Yesterday was a nice day. A lot of good news, some of which is a little scary. First off, my cardiac team said I don’t need an A-line. So my arms are catheter-free, and I don’t have to worry about the possibility of a femoral line.
Also yesterday, Stacy brought my mail and I got a letter from the transplant coordinator saying that I’ve been officially removed from the list for a kidney. In big bold letters it says “You have been removed because your kidney condition improved so you no longer need a dual organ - kidney transplant.” I have it in writing now.
Here’s the big scary news. My team also told me that the person in front of me in line just received their heart. So I’m next. Keep in mind, I still don’t have an offer, and I still may end up waiting for a few weeks or even longer, but I’m next. It’s news that’s really wonderful, but at the same time, I don’t know how to feel about it. It will still involve waiting, and I’m very reticent to be excited about it simply because it has been so long. The idea of getting excited then ending up waiting for another few months is heartbreaking. But, in the moment, I’m finding a cautious joy. Who knows if joy can actually be cautious, or if that’s just plain ‘ol fear getting in the way, but whatever it is, I’m enjoying it.
What’s so scary about it, aside from the inevitable, undetermined wait, is honestly, everyone else’s reaction to it. I want them to be excited for me and relieved, but at the same time, it’s not an offer. So I don’t want to be “convinced” to be excited. I don’t want people telling me “you should be happy”. That will be way more upsetting to deal with than people realize. On the surface, it’s great, jump-for-joy news. But there’s a lot of unknown history behind all news. Living with the constant ebb and flow of drastic decisions over the last few months has made me very cautious about all information, positive and negative. I’m treating this news in the exact same way.
So Yay! But Yay? Ok, Yay.
I love each and every one of you.
A-nother A-line Disaster Thursday, November 18, 8:20 AM
Well, it seems the gods don’t want me to be comfortable here in ICU. The second arterial line they installed now doesn’t work either as of yesterday. I can’t help but think that if the idiot resident who did the first right radial A-line sutured it in like he should have, i would be fine now. But he didn’t. Ass.
So now I have no A-line at the moment. They’re letting it heal since they can’t insert it on the left wrist (remember, permanent nerve damage from the very first A-line in August), and they can’t go right axillary because there’s no good insertion point according to the sonograms. They may try to insert one later today or tomorrow.
There’s nothing like a catheter procedure floating in your future to take away any sort of relaxation in your system. I got no sleep last night, but mostly because it was so damn loud with staff conversations and random people just entering my room and raiding the supply chest.
Ugh. I hate this. But I love each and every one of you.
What’sh For Dinner, Alish?Wednesday, November 17, 9:19 AM
All is well. Just had a team visit and everything is optimal as we wait for an offer. Still tethered to poles and machines on short leads, but feeling positive nonetheless.
So what is it about ICU and apple sauce? Since I’ve been in this unit, I always have on my meal trays a mystery apple sauce. I never order it. I’ve never even thought of ordering it. I’ve made sure that it’s not on my orders, but come meal time, there it is. It’s like I’m being haunted by Peter Brady’s Bogart impression. Now if I start getting mystery “pork chopsh” as well, that will really be weird. And shwell.
I love each and every one of you.
A-Line Disaster. Tuesday, November 16, 9:28 AM
Well last night was eventful. At around 10 PM my nurse was changing the dressing on my A-line on my right wrist. Catheters are always sutured in for stability and safety. Except for mine. Do you remember that resident that I talked about earlier during my heart pump debacle? The one that rolled his eyes at me? He did this A-line and held it in with tape. So, when we changed the dressing, which involves removing that tape, it pulled the A-line out a little, and messed it up. Again, residents stink.
So around midnight last night, the PA on duty and my nurse ended up having to give me another one at a site a little higher up on my arm. It’s working better now. Normally, they would replace it with an A-line on the left wrist, but perhaps you’ll remember a med student fucked that wrist up with, yes, a botched A-line when I first got here in August. Because I already have permanent nerve damage on that wrist from that procedure, they wanted to stay away from the left wrist. Oh med students. How I hate all of you.
Other than that, all of my pressures, levels, kidney function, and all are A-OK. Just waiting now. Doctors are happy, and everyone is wishing me a speedy donation offer, and a speedy recovery. I’m walking about three times a day, and trying to stay healthy.
Thanks everyone for listening/reading. I love each and every one of you.
It’s Official. Monday, November 15, 5:16 PM
Today was actually quite busy. I went on three, count ‘em, three walks today, and had my PICC line removed. All before 4 PM today.
The day started with some good news. It’s official, I have been re-listed as a single organ recipient on the list. I’m only waiting for a heart. My kidneys are fine. I’m so relieved. It was an emotional week for me last week, and probably included the lowest point mentally for me (at least having to do with the transplant). So this morning was very smile inducing. I also have a great nurse today, so that’s a huge spirit lifter too.
I mentioned I had my PICC line removed today. It was done by the Physician’s Assistant on duty. As we were chatting, she mentioned she was from Maryland! She actually went to UM College Park and lived in the Cumberland dorm. That lead to a lot of chatting and more spirit lifting, so today has been a really nice day.
I hope all is going well out there with all of you. Do fun and interesting stuff and tell me all about it in a text or email. It’s nice hearing about the outside world while I’m waiting in my little fish bowl. I love each and every one of you.
Fingers Crossed. Sunday, November 14, 9: 23 AM
Guess whose creatinine levels are down to 1! Looks like my kidneys are pretty normal now. I’ve been off any diuretics and most of the added pressure medicines. The heart pump, as painful and uncomfortable as it is, is helping a lot. Hopefully the transplant team will visit tomorrow and officially tell me I don’t need a kidney transplant. All the weekend covering doctors have been telling me I don’t, but I haven’t had an official decision from the transplant team. I believe I’m still listed as needing 2 organs on the list.
Still status 2, also still waiting. Short update today, but good news! I hope you did some fun stuff this weekend. I love each and every one of you.
‘Tis Almost the Season. Friday, November 12, 10:24 AM
I just Christmas shopped for my nieces from the hospital! I really thought I would be in recovery by now, but I’m still here, and it’s 2 weeks to Thanksgiving! Holy Schnikeys.
So far my numbers and levels have been good enough or improving to the point where it’s looking like I may not need a dual organ transplant. No final decisions yet, but I t sounds like I may end up needing just a heart.
Heh, “Just a heart”. That’s all, maybe there’s one in the couch cushions. It’s weird that I went from hoping for a triple by-pass, to now hoping for JUST one organ. It’s like my life is one of extremes. If I’m going at all, I’m going all the way. Next step is frozen head with the Golden Girls.
I hope everyone has a great weekend. I’ll be sitting here waiting and living through you for the moment, so do something fun and tell me about it. I love each and every one of you.
Sleeping In, My Bowels and Gwyneth Paltrow. Saturday, November 13, 7:58 AM
Oh. My. God. I woke up at 7:00 AM this morning. That hasn’t happened since I’ve been in the hospital! I’m always up or awakened by 5:00 AM, usually earlier. My night shift nurse delayed my 4:00 AM chest X-ray until 7:30, and let me sleep.
I wasn’t expecting to get much sleep because I had been put on a “bowel regimen” after the surgery. So the last few days involved stool softeners and laxatives. I rejected them the first few days because I had just come off of NPO, and was on a clear liquid diet. During that time I had a normal BM WITHOUT the regimen. But, they kept it in my daily orders so I relented and tried it.
Big mistake. Yesterday evening and last night, three times, I had that “sudden urge”. Ugh. Nothing here happens fast enough to accommodate sudden needs (just HUGE surgical decisions). So having to hold it in while the poor break-covering nurse tries to figure out all my wires and tubes before I could sit on the bedside commode was so panic and tension inducing. It was like trying to keep Gwyneth Paltrow’s $80 jade egg up there. Get out of my bowels, Gwyneth.
So after that ended at around 2:00 AM, I thought I’d just have a few hours of sleep before having to get up. But no! I slept for FIVE HOURS STRAIGHT! That hasn’t happened in so long! I woke up to my night nurse changing shift and updating my day nurse. Oh it was heaven. I loved it. Just like I love each and every one of you.
Settling In. Thursday, November 11, 9:32 AM
My team just left my room and things are looking better. My creatinine is leveling out and normalizing. It seems like so far the increased blood flow is working. We’re waiting a few days before making any final decisions, but so far I’m still on the list for both organs just in case.
Just waiting and getting used to all the new wires and tubes going every which way. Using the bedside commode involves a bunch of wires going over my head and few twists and turns, leg lifts and catches. It’s like a game of Twister. But still, it’s better than a bed pan.
I started walking again, finally. My last walk was on Halloween. Walking is much more of a chore since I have to push around a huge rolling heart pump monitor as well as the drip pole. Since I’m in ICU, another nurse has to follow me with a wheel chair just in case. But hey, I’m walking again.
Pain management is slowly getting better. Tylenol plus a muscle relaxer is working well on my neck and back as well as the incision site.
That’s it for now. Spirits are still a battle to keep up, but I’m managing so far. Can’t wait until the day I’m out of here to see people again. I miss that. I love each and every one of you..
A New Day. Wednesday, November 10, 9:35 AM
Yesterday I was told I now need a kidney transplant as well. My creatinine wasn’t going down, and the kidney transplant team was concerned that after the transplant, I may end up on dialysis. Post transplant my wait for a kidney would be up to 10 years. If the just added it to the procedure now, it would be done.
With my heart pump, I’m still on Status 2, and there aren’t many of us 2s here in the hospital, so we get offers quickly. That’s why the teams needed to assess what to do in case an offer came in, and they decided on both to be safe.
This morning, my teams came in and announced that “This is a new day!” Apparently my creatinine levels are trending downward to normal, and I may NOT need a new kidney. They feel we’re in a good place to make a better decision, and that includes the option of only needing a heart. It looks like the heart pump is doing what it should, and helping my kidneys get decent blood flow.
Dr. Levine came by and mentioned that I had normal kidney function until October, and it seemed to him that it was just a matter of blood flow. He was surprised that I was on the list for both organs.
I’ll know later today or tomorrow whether they’ll keep me on the list for both heart and kidney, or just heart. It’s looking more like the increased blood flow is helping a lot. So fingers crossed.
Roller coasters, eh? I love each and every one of you.
ICU SUCKS. Tuesday, November 9, 7:00 AM
I got a nice big goose egg of sleep last night. Every hour I had some sort of sugar check, painful dressing change, or line/tubing problem. Even though they don’t have to wake me for vitals (it’s all automatic now), they have to wake me for so much other shit. I’m in pain and just taking Tylenol for it. Which means it helps if I could sleep through some of it. But no, I can’t.
I hate it here. My independence is gone. My tubes and lines are so short that I can barely pull myself up in the bed. They transferred me to a chair at 4 AM, because I was “awake”. I love that. They wake you up and then say, “Since you’re awake…”
Most frustrating moment of the night award goes to…
2:30 AM
I’m awakened for a blood draw (which they can do while I sleep, but hey, let’s check your sugar “since you’re awake”.)
“I’ll be back in at 3:00 AM to wake you up for something else you should be able to sleep through, then when your lab results come back, I’ll come in again at 4:00 AM to turn your Heparin drip back on, which I could let you sleep through, but since you’re awake… That will be the last 2 interruptions. I’ll see you in 30 minutes.
Literally 3 minutes later:
The door opens and he comes back in and starts talking to himself out loud as he charts in the computer behind me.
I hate this place. But I love each and every one of you.
2 Steps Back. Monday, November 8, 7:50 PM
I now have an axillary heart pump. It’s in my shoulder instead of my leg, so I will eventually be able to walk around with it. I can’t really get out of bed, as now I’m attached to a drip pole plus a separate heart pump machine/monitor. Of course, they are on opposite corners of the bed. My lines are so short that I can only lean forward a few inches, about as far forward as an airplane seat in coach leans backward. I’m in for a long flight.
I’m now in ICU, back in a horrible half inflated bed. As soon as I get somewhat comfortable, the air bed “adjusts” and that little comfort is gone in a whir of air.
There is now a battle of inserting a Foley catheter which I won’t allow. So far everything is good, but it’s frustrating how they set you up to fail when they want. Out of surgery, I peed about a FULL LITER. That’s after being on NPO since midnight. Then, at 5 pm after one sad-ass clear liquid meal, they say I need to pee or I’ll need a foley. I’m going to load up on as much water as I can and pee like there’s no tomorrow.
My EF has increased about 10% to 28. As improved as my numbers are, I feel like I took a huge step backwards physically. They don’t have disposable underwear in ICU, so it’s the Scottish Swing again, and I’m pretty much bed ridden aside from scheduled walks. My independence is gone, which has punched my positivity in the face. There’s no lounge chair in my room yet, not that I could get into it. No privacy, people just walk in and go through the supply chest then walk out without saying a word. I can’t even turn the lights off with my call button anymore. Oh I miss 6 South.
At least the pain is manageable. The swelling in my throat from the breathing tube is better, and the incision site feels “calmer”. The neck and back pain are here again because of the bed and limited movement, but I can at least try to stretch a little, and use my massager.
I’m trying to stay as positive as I can. Thanks for reading my vent. I love each and every one of you.
Nope. Sunday, November 7, 6:49 AM
No procedure still, but they did a nice thing and cancelled my NPO before breakfast, and let me know that they will just do the procedure Monday at 7 AM. I can’t tell you how much that freed up my mind and eased the waiting. Yesterday was a calmer day. Today should be as well.
For a night with an extra hour of sleep, it sure didn’t feel like it. I had
Such broken sleep that it sort of felt like no sleep. I’m worried that I’ll nap today and not be able to sleep before the procedure tomorrow. But who knows, maybe it won’t matter.
Last night I had a newer night nurse. He likes to leave the blood pressure cuff on all night and set it on auto every 2 hours. Most nurses skip the 2 AM check, and try to consolidate all the meds, tests, and vitals for maximum continuous sleep. This one does not do that. I’m starting to realize how valuable that 12 - 4 AM sleep block is, even if it’s not that much.
So I have a sleepy day in front of me followed by an anxious night. At least I know the procedure will be at a specific time, and it’s in the morning, so short NPO order. I wish I could go back to bed, but the visits are about to start…
Thank you everyone. I love each and every one of you.
Still Waiting. Saturday, November 6, 1:18 AM
An early post today because I don’t know what will happen after this point.
The procedure didn’t happen yesterday. OR was too busy. They did let me know early enough to get a decent cold lunch and a hot dinner before going back on NPO as of midnight. I won’t have breakfast again today, but that’s not too bad. Depending on when they can squeeze me in, I may have the other 2 meals. Yesterday they let me eat at 2pm. Today, they may hold me longer since tomorrow is Sunday. My nurse noted there is also a scheduled slot for my procedure at 7 AM on Monday morning, I guess in case I can’t get in today.
I hate this kind of waiting. It’s like having all of your stuff packed and ready for a move away from a place you really like, knowing you’re going to a place you kinda don’t. Then it’s delayed. You’re stuck in the better place with all the things that comfort you packed away. Then, last minute, things change and you’re stuck in that space living with a few outdated decorations, amongst all the areas your cleaning deposit will take care of when you’re gone. You’re made to anticipate a move you weren’t wanting in the first place. You already said your mental (and actual) good byes, now it feels awkward. Add hunger to that, and that’s what I’m feeling.
Who knows when it will happen today if it happens at all. I feel like I psyched myself out to jump in the water, but there’s a sudden “all-clear” because someone peed in the pool. It’s strange how I can wait on a list for months on end for an offer with little frustration. Then take away a few comforts, add a healthy dose of fear, and future nights on a half-inflated air mattress, and I can’t last a few days.
You know, actually, this is the feeling I had leaving my apartment after my divorce. Then, it was Christmas decorations and a move to the East Coast. At least then there was no delay and all went really smoothly. Now, it’s Halloween, heading back to ICU, and worse off, there’s no definitive date to leave. But it feels like that same “end of something”. But with no food.
Well, we’ll see what happens today. I love each and every one of you.
Waiting. Friday, November 5, 9:31 AM
Waiting for the procedure today. I’m packed and ready for the move to ICU. I’m listed as a “non-emergency add-on”. I’m sort of hoping I don’t hear anything today, have a nice dinner, and then push it off the neil Monday. That would be a nice last weekend in this unit.
I hate the ICU beds. They’re like sleeping on a half-inflated air raft. That will probably be my home until I get an offer, however long that will take.
Ugh. I’m nervous, scared, but still feel well cared for. Doctors and nurses are very calming and reassuring, and I got my Friday visit from Dr. Levine (with extra comfort). Just waiting now. Wish me luck! I love each and every one of you.
Ch-ch-ch-ch-changes. Thursday, November 4, 8:03 PM
Turn and face the strange.
Yesterday was better pain-wise, but it’s super scary how weak my legs are. They barely support my weight. When I walk, I need support, like a walker. It’s super frustrating. Hopefully this will go away when the Bumex drip is removed from my drip line.
Now I’m waiting for a heart pump procedure. It didn’t happen today. I had dinner, and I’ll be on NPO at midnight tonight, and I’ll be “end of day, on-hold” tomorrow for the procedure. I’ll be frank, I’m scared.
The last heart pump I had for 6 days was a femoral heart pump. I couldn’t move, had to lie flat, was bed ridden, and was going crazy after 2 days. There is another way they can insert the pump. The axillary way is through the shoulder, which means I can move around like normal. BUT it’s more of a surgical procedure and involves an incision and sutures. So there are more risks. If anything happens with the pump, they have to do a femoral instead of changing out the pump. I think it’s worth it though for my sanity, as I don’t know how long I’ll be on it.
One thing being on a heart pump does, is it bumps me up to Status 2. I still have the challenge of having the rarest blood type to match, but according to my social worker, the bump in status is quite significant. I hope so.
Another thing the heart pump does, is I have to go to ICU. I’ll be leaving this unit, and all the great nurses here. I’ll miss everyone. Like, a lot. I feel like they’ll all think I got my heart, but in reality, I’m on a heart pump in ICU. A few that know have mentioned that they will visit me in ICU. So sweet.
So that’s why I’m so delayed with my post today. I’ve been so nervous about the upcoming changes that I couldn’t really focus and had to sit with my slight overwhelm for a bit. I’ve been on phone silence all day, and everyone has been so understanding and still super supportive. I’m tired, but I’m packing up my room slowly in anticipation of the move. Not much to pack, but enough to tire my brain.
Thank you everyone for all the texts and emails I’ve been getting. They all carry the much felt love and support from you, and are all so appreciated. I love each and every one of you.
A Sea of Pain. Wednesday, November 3, 7:16 AM
Yesterday was excruciatingly painful. I spent the day dealing with such intense leg pain that I stayed in bed all day. That never happens. Everyone was assuming I was getting leg cramps, but it was an actual continuous pain that felt something like my legs being scrubbed from the inside out. Literally every resident shrugged it off saying, “If his potassium and magnesium levels are fine, he’ll be ok.” Yes, they only talked to the nurse, not me. Finally the nephrologist, Dr. Sharobeem said, “Yeah, that’s the Bumex drip. Are you ok?” And we discussed it more. Again, I felt validated that residents are useless.
There wasn’t really anything to take for the pain. For some reason, the cardiologist Dr. Patel asked that I not take any Tylenol. It’s the only pain reliever they offer me. So, my only other solution was going to bed at 6:30 pm and trying to just sleep it off. The pain was so bad, and my neighbor’s guests were so loud that I couldn’t really stay asleep, so I just, well… cried silently. I didn’t want to talk on the phone, I didn’t even want to pick up my phone to reach out to anyone. My mind was so consumed with the ocean of pain that I let go of the side of the ship and sank in it for a while.
Then, while trying to sleep, at around 9:30 PM, the nurse said the Dr. (another resident) added Metolazone, a second diuretic. He knew my only recourse to the pain was to sleep, but he decides to have me wake up even more often to pee. So, I was awake more, and cried more. Perhaps his intent was diuresis through lacrimation. Or maybe he just wasn’t thinking. Probably the latter.
My night nurse was so patient with me. I was not in a good mood (quiet, as she kindly put it). This morning as she was doing my numbers, she said she had never seen my like this before, and that she felt sad and missed the old positive me. I was really touched that with all the patients she’s cared for since the last time she saw me, she remembered me. Of course, this morning, I apologized and thanked her for putting up with me all night. She did her best to make sure I got as much sleep as possible.
Yesterday and last night were 2 of the toughest times I’ve had in the hospital. I’ve never been reduced to handling something by just simply weeping. And yes, I’m including going through my colonoscopy with no sedation in this whole comparison.
The moment this morning when I saw light was after about a 2 hour stretch of sleep, the longest in the night. I woke up and the pain in my legs was so much lighter. It’s still there, and so is the skin sensitivity on my thighs, but it’s much lighter and easier to bear. I had peed about every hour through the night, thanks to the second diuretic, and I think getting rid of that much fluid helped the pain. My legs are just super weak now. I can’t really walk without grabbing onto something stable. I feel like I don’t have use of them yet. Hopefully that strength will come back soon.
Lastly, yes, there’s talk of another heart pump. If this mass diuresis plan doesn’t work, by the end of the week, they will schedule a heart pump procedure. This was coming from Dr. Patel, the current cardiologist, not a gaggle of residents, so it’s valid. This morning my pressures were better, so we’ll see what happens. Hopefully I’ll respond well to the Bumex drip and we won’t have to worry about a procedure this weekend. But we’ll see.
I love each and every one of you.
Residents Just Don’t Care. Tuesday, November 2, 7:10 AM
Well, I think I give up. It seems that no matter how clear I make it, residents just don’t give a flying fuck. I want to be notified of any additional medications or procedures BEFORE they happen. Reasonable, right? Wrong. Not to residents.
Yesterday I found out that I’m going to be on a constant drip of the diuretic Bumex. Up until now, they’ve been spot dosing me through my PICC line. But they’ve been cautious about it because at the same time, they’re whining about my kidney function. My creatinine levels have been around 1.8 to 2. Normal is 1. A sign that I’m either dehydrated, or my kidneys need more blood.
So does this mean that my creatinine levels are fine now? Is all this pain in my legs since the drip started normal? Tylenol took some of the pain away, but now they’re just weak. I can barely walk. Is THAT normal? I wouldn’t know, because no one bothered to come talk to me before putting me on the drip. I want to be a part of the decision making regarding my care, or at least let in on it. That’s not possible here.
I swear. I was in pain all evening, depressed, and at times in tears just ready to give up. I’m resolved now to no longer cooperate with resident visits. When they barge into my room, my TV stays on, I keep reading, or typing, or sleeping. I’m not giving them any more of my time. When it comes to them ticking me off of their list and asking the same stupid questions, they have all the time in the world. But a simple notification of new medicines or procedures? No where to be found. As far as I’m concerned, they can now just come in, listen to my chest and back, then get out. I’ll answer a few quick questions, but my time is my time now. They’ve made it clear that they don’t care about any of my concerns.
I bet the next 3 resident visits coming up this morning don’t mention at ALL the Bumex drip update. I’m on so many drips now, that they’ve had to add another separate drip machine to my pole. I bet they don’t even notice. Ugh, I’m so angry and disappointed.
Well, In the middle of my leg pain, I’m going to try to think of better things, you guys, and seeing all of you again eventually. It’s hard to care about anything right now, but caring about that is a bit easier. That, and all residents roasting on a spit. You’re always my source of support and love. I love each and every one of you.
Already November! Monday, November 1, 8:59 AM.
I love all the Halloween texts and emails that I got! It’s great seeing everyone’s pumpkins, costumes, and celebrations over the weekend. I felt like I was there!
Numbers today are stable. They are trying to get my heart and kidneys to play well together. They’re trying to stabilize my pressures and at the same time reduce my creatinine. But nothing is an emergency right now. None of the doctors seem worried at the moment.
It’s Monday today, and I think everyone who works here has a shift today. It was so quiet and short staffed over the weekend. On Friday, everyone I talked to said, “I’ll see you Monday!” So I think everyone is back all at once today. That’s good, because that means there should be plenty of help and fast responses to the call button.
Tomorrow is Day of the Dead, so I plan on watching one of my favorite Disney movies, Coco. The version of “Remember Me” at the end always makes me cry, guaranteed. I love it.
Dr. Levine just stopped by. He’s disappointed that I didn’t listen to him and get myself over to the other side of the building (Ha!). He’s such a great doctor. He showed me a picture of his grandson (18 mo.) in his Lion costume. He said they taught him how to roar as well! Too cute!
I miss you guys terribly. It’s getting harder and harder to stay as positive as I usually am the longer I wait. BUT, I’m managing to behave (as Dr. Levine says, I’ve been patient and behaving long enough!) Each day is closer to the eventual day that my first offer comes. Thanks to all of you for all the love and support that you constantly send me. I love each and every one of you.

The Road to Healing

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DECEMBER 2021 POSTS

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See January 1 for today’s post. Friday, December 31
The Cold. Thursday, December 30, 11:53 PM
Man it’s been chilly the last few days. It’s strange because I’ve barely noticed it because I’ve been up and about trying to “mildly exercise” inside the rental. The rain has been pretty constant, which is nice, but I haven’t been able to walk outside like I usually do. I miss that a lot as it’s been one of those daily activities that remind me of how nice it is to be out of the hospital.
But it is so nice being out of the hospital.
It’s strange, I don’t know if it’s because of all the medications, or because hospital room thermostats are more exact, or a combination of both, but my body temperature has been so unpredictable. I’m slightly shivering one moment, then a few hours later I’m warmer than warm. It’s hard to get the thermostat just right. It doesn’t really help that it’s different at night. Is there a male version of menopause? Is my new heart just trying to make its new home more like the previous one? Maybe.
I want to thank everyone that has contacted me about my spirituality mentioned in the previous few posts. It is something that gives me a lot of comfort, and I really cherish it, as well as the long journey and hard work it took to shape it into what it is today. It’s flexible and fluid so it’s always an open and accepting yet discretionary ideology. Just like me.
I love each and every one of you.
The Sound of Rain. Wednesday, December 29, 11:58 PM
I cannot tell you how nice it is to lie in bed and listen to the sound of rain after being in the hospital for over 4 months. The comfy bed, the soft covers, the squishy yet firm mattress and pillows, and the sound of rain patting against the window and walls of the condo are such a contrast to the harsh recliner or half inflated air bed, being connected to a drip pole, and a view of other windows looking back into your room. Add that to being able to sleep continuously and/or nap whenever I want, and you can see from where all my gratitude comes.
When I’m walking outside, a lot of times all I can think about is the crisp air, the sun on my face, and the fact that I’m not pushing around a huge heart pump monitor or a drip pole worrying about catheters being tugged and pulled. I may be breathing heavily, but that’s the only thing that’s usually distracting me. All those other worries are now gone. I’m not looking at the outside from a glass window bridge between ICU and one of the towers, I’m actually outside.
There are so many things like this that I’ve been coming across every day that I’m healing here in the rental. Some people ask where my patience and gratefulness comes from, and why I can access it so easily most of the time. It’s because of moments like these. All the little things really do pop out at you when you’ve been denied them for so long. Soft, fleece, lounge wear, instead of a 24/7 hospital gown, actual food that I cooked with my own hands, and especially an actual shower versus a CHG wipe down.
Yes, I didn’t shower for over 4 months. Bath time consisted of taking off my hospital gown, wiping down with CHG wipes, and then putting on a new gown. It was so nice to take an actual shower and wash my face with something other than a wipe, and wash my hair… period.
I’m so thankful for all the daily things that I encounter that make me think, “Oh yeah, that’s what that feels like.” Or, “I forgot about that.” I’m also thankful for your love and support, of course. I love each and every one of you.
Puzzles Galore. Tuesday, December 28, 11:16 PM
What a bright and shiny day we had today here in South Pasadena. Bright, but really chilly. It was kind of nice. It reminded me of really nice winter days in Maryland (but not as cold).
I’m still feeling really well, getting stronger and stronger. Still getting winded sooner than I would like, but it’s getting better and better each day.
Today we finished a puzzle. Stacy and I finished a 1000 piece Peanuts Christmas puzzle. We started it Christmas Eve, and just finished it today. Not too shabby. We have a series of “recovery puzzles” that I got to do here at the rental, but we’re having a hard time gearing up to take apart the currently finished one. I don’t know if you’ve ever completed a large puzzle, but we can’t stop staring at it and rubbing our hands over it feeling all the correctly assembled, perfectly fitting pieces.
By the way, I’m still sneezing like a cartoon. Those gasps, snorts, and chortles are still happening, sometimes chased with an actual sneeze. But sometimes no sneeze comes and I look like an indecisively angry then happy, then surprised Buster Keaton.
I love each and every one of you.
The Sound of a Chopper. Monday, December 27, 11:58 PM
Congratulate me, I’m officially in Month Two of recovery. I had my first clinical appointment in month two today. I don’t have another appointment until January 7 (which is an Angiogram). Now, I have one appointment a week as opposed to two per week. One week will be my clinical (like today), and the next week will be a procedure, like a biopsy.
It’s so strange to think I’m this far along in recovery. I’m feeling really good, and my energy is increasing each day. I still get winded quickly, but with my walking and my “Incentive Spirometer” I’m hoping it will improve faster than slower.
Yesterday, Boxing Day, we actually had our Christmas. On the 25th, we didn’t really get a chance to open our presents, so yesterday evening we exchanged all of our gifts. Stacy actually got me a rare set of Mickey ears which are Figment themed. They were released a while ago and as far as I knew, were just not available anymore. Of course, she found them, and gave them to me for Christmas. We had a great time, and ate a lot of Chinese leftovers.
Earlier in the day I heard helicopters here at the recovery rental, and today at the hospital during my clinical. The sound of a helicopter means something so different to me now. It used to instill hope, then after a while it was difficult to hear, then after the transplant, it filled my new heart with gratitude. Now it makes me think of the new life and second chance I have. I get to spend a little more time here with friends and family.
I love each and every one of you.
Missed Another Post! Sunday, December 26
Happy Holidays. Saturday, December 25, 11:36 PM
The day I celebrate the holiday is here. I celebrate Christmas, and my day was calm and spent with my Mom and amazing friend/sister, Stacy. In honor of my stay at Cedar’s Sinai, we had Chinese for Christmas Dinner. Very yummy with of course, a lot of left overs. Although my day ended with muscle spasms, extra strength Tylenol, and the shakes, it was still a great day. I’m just realizing that we didn’t open presents. We’ll have to have a Boxing Day celebration to open our gifts tomorrow. They’re all still under our small, three foot tree all wrapped and pretty.
I’m looking back at the day today and realizing it wasn’t how I pictured it would be as I was sitting in the hospital, hoping to be out by this time. But even so, as I look back, I’m going to remember how much my Mom loves me, in spite of not being able to hear anything I say, and Stacy spending time with her dad, and then coming here to celebrate with us, and make sure all is ok with me. I am truly grateful for the people I got to spend time with today.
In honor of the Holiday, and since this is my own space, I’m going to share a little of my spirituality since I’ve been getting large doses of others’ views recently.
While I was waiting for a heart in 6-South at Cedars, there was a student nurse from Azusa Pacific University, a majorly Christian college right next to Citrus College, where I work. His name is Raymond, and he asked if he could do a patient profile on me for one of his classes. Most of the questions were about my condition, my Swan catheter, etc. But one of them (I’m assuming because it’s APU), was about my religious beliefs. He asked if I had any. I said, “No, but I am spiritual.” Then he asked me to explain.
A long time ago, I decided not to make fear-based decisions. Things were going very well, until it came to my religion, and I realized the only reason I believed in the Christian dogma was because I was scared of going to hell. It took time to find myself, but I eventually created my own belief system based on the mind and will that was “given by God”.
Do I believe in God? I hope that if there is a higher power out there, that it is big enough to out-scope human understanding. Maybe in some afterlife my soul will become enlightened by being able to understand this being, or even a little part of this being. But that’s where my faith is. It’s not up to me to say there is, or there isn’t a god. It’s up to me, as a human, to do what I can to create more good in the human world I live in.
With that structure, I still have faith, but I’m not “being good” for some heavenly reward that’s been told to me by a man-made religious dogma. I’m doing good because that’s what I want to see in the world. Kindness creates more good. Gratitude helps others create more good. Acceptance gives people the knowledge that they can also do good. None of these things have anything to do with a fear of going to “hell”. Their only purpose is to create more good in the world.
“That’s my ‘spiritually agnostic’ view of my soul and its place in the world.” I told him. He said he enjoyed the conversation and thanked me.
Oddly enough, after my transplant, I got Raymond again while recovering in 6-North. He remembered me, and when he took me on one of my many walks around the unit, he said that my view of spirituality really stuck with him, and he really appreciated me taking the time to talk with him. He said he was so glad to get to see me before and after the transplant. I was really glad to see him too.
Happy Holidays to everyone. I love each and every one of you.
The Holidays. Friday, December 24, 11:58 PM
It’s Christmas Eve! Today and tomorrow mean so many different things to different people. I don’t really follow any religious dogma, but I do see this as a time with spiritual elements, and powerful forces and graces that can help humanity if we let it.
Do I subscribe to the story of a miracle virgin birth? No, I don’t. At the most, I can see that story as a parable, much like Aesop’s. Do I appreciate the story? Yes. Do I appreciate the story being constantly thrown at my transplant and recovery? No. Like I’ve said before, all my gratitude goes to the donor and his or her family, to the doctors, nurses, and “Transplant Team” whose skills, heart, and incredible caring got me through it all, and continue to guide me along the path of healing, and to all my friends and family who have supported me this entire time.
All of these things together are what I consider god. All of these are my higher power. I am truly grateful, and have left a lot of burdens and worry to this higher power.
Don’t get me wrong. I don’t want to step on anyone else’s beliefs, I just want to make mine clear, as so many people ignore them. Oddly, I do my best to always respect (within reason) the beliefs of others, but these others just seem to think that I’m wrong. Which is ok. I’m ok if you believe in “one true religion”. I don’t, but I don’t happen to need that. I realize that some people do, and there’s no judgement there. Believe what you believe, you just now know my thoughts on it all.
With all that said, I hope everyone has the Merriest of Christmases. I hope you had the Happiest of Hanukkahs and Kwanzas, and/or whatever religion you subscribe. I will definitely have a great holiday full of gratitude for all of you. I love each and every one of you.
Charles Dickens. Thursday, December 23, 11:37 PM
Christmas is close, and I’ve been watching different versions of Dickens’ A Christmas Carol. Aside from reminding me of some of my absolute best times in musical theatre (A Mulholland Christmas Carol y’all!), the story makes me feel something additional this year.
There’s something about the transition in Scrooge and the end of the story that I identify with more. It’s not so much from hate to love, as much as it is from old to new, and from sick to healing. I guess it’s obvious where I’m going with this. I was surprised to get teary eyed when Scrooge embraces the season, when he repents at his nephew’s home and is accepted instantly by the entire party, when the Cratchets receive their anonymous feast, and when Tiny Tim lives. I’ve seen all these scenes come about every year in every version. This year though, these scenes mean a little more to me.
The ideas of embracing, acceptance, generosity, and healing are all concepts that I’ve had the honor to be graced with over the past few months. I’ve been wanting to watch this story over and over again, at first unsure why, and now that it’s clearer to me, I want to watch it even more.
Thank you everyone for giving me such a happy, appreciative, and warm holiday through all your love and support over this whole time. Your embracing, generosity, and acceptance have brought me so much healing. I love each and every one of you.
The Goose Is Getting Fat. Wednesday, December 22, 10:40 PM
Oh man, what a tiring day. I got locked down in the parking garage (I didn’t realize the key I had didn’t work), trudged up a way too steep incline for me (the driveway heading down to/up from the parking garage), and had to rest and concentrate on getting my heart beat to normalize afterward.
I know that doesn’t sound like much, but it was a little scary. I’m not used to feeling my heart beat so hard against my chest and so fast. I have to remember that I’m a month out of heart transplant surgery, and to take things a little more carefully. Needless to say, I didn’t walk anymore today. Still did over a mile with that little trek, plus all the running around the apartment though. So that’s good.
Christmas is almost here. It’s just a few days away. I’m so lucky to be spending it outside of the hospital, and with family. Just in time too. It looks like all the hospitals have gone back to a single visitor a day for most rooms. Omicron and the remnants of Delta are limiting visitors. Don’t worry, I’m staying inside the apartment most of the time, and I’m not having visitors quite yet. I miss everyone, but I also am focusing on my new heart and making sure I don’t do anything to rev up my immune system.
I hope all of you have lovely plans with your family and friends. I definitely do. I love each and every one of you.
Prairie Dogs. Not So Cute. Tuesday, December 21, 10:31 PM
What a beautiful day it was today. I mean, every day is beautiful after getting a second chance, but the weather today was specifically nice. High 60’s, sunny, and clear. I had a great walk today, still not as far as I usually go, but still at least a mile. I didn’t get as winded today on my walk. I could have probably gone a little farther, but with all the drugs I’m on, my bathroom tendencies go from “What nice weath-“ to “OH MY GOD! PRAIRIE DOGGING! PRAIRIE DOGGING!!!” Yes, it’s that sudden sometimes. SO, I don’t walk too far just in case. Also, when I walk with my Mom, she’s more frail and I don’t want to risk her having to catch me or help me physically, should I have one of these instant urges.
I am ready for the holidays. All my presents are wrapped and under the tree, and I’m so excited to give them out on Christmas Day. It’s been so great having my Mom around and getting to spend the holidays with her. We’re still not sure what we’re doing for Christmas dinner, but Stacy and I are up for Chinese take out in the spirit of good ol’ Cedars Sinai. We’ll see what my mom thinks about it. I think she’ll really like it.
I can’t believe it’s already the 21st of December. I can’t believe I’m where I am right now in recovery. It all seemed so far away at one point. I didn’t think I’d ever leave that hospital room, or ICU. It’s another time of gratitude (which I think will last for quite a while). I love each and every one of you.
Complex Sneezing. Monday, December 20, 10:02 PM
Funny thing: I now sneeze like a Tex Avery cartoon. There is a series of random faces, gasps, snorts, and inhales that happen when I sneeze, and sometimes I go through them all and end up not sneezing. So to any casual onlooker, it’s like I’m temporarily possessed by a baby demon. I don’t know if this has anything to do with the surgery, or the meds, or maybe it’s how my donor used to sneeze? Who knows. It just makes me laugh when it happens, so I like it.
Today was my final weekly biopsy. I don’t have another appointment until 12/27, and that will be just a clinical. A full week without having to go to the hospital. 2 full weeks without a biopsy. For the past 4 weeks I’ve been going every Monday (biopsy and more) and Thursday (clinicals and blood draws). It’s amazing how fast this recovery is going. As soon as I begin to not feel so winded so quickly, I’ll feel more like I’m on the path to normalcy.
I really already am on that path. I just want more normal endurance, but thankfully, that will come in time. All the doctors are very happy with where I am now, so that makes me happy as well.
Another bit of good news from today's biopsy and clinical: I start tapering down one of my major anti-rejection drugs tomorrow. I’ve been given a Prednisone wean schedule to follow over the next few weeks. It looks like it will take me from tomorrow until Valentine’s Day to go from 10 mg twice a day, to 10 mg once a day. Hoorah!
I love each and every one of you.
Walk Hard. Sunday, December 19, 10:56 PM
I don’t know exactly why, but my walks seem to be getting harder. More difficult. I’m just getting winded still so quickly. It’s not necessarily getting worse, it’s just not getting better as fast as the rest of me. I’m also still a little shakey and light-headed. Those last 2 symptoms are from the anti-rejection drugs and their heavy dosages, so we’ll see how this works out as they’re tapering off those meds starting tomorrow.
Tomorrow is my last weekly biopsy. It’s my only appointment this week. There’s no Thursday clinical like there usually is. I think because it’s so close to Christmas Eve. It’s hard to believe that things have moved this quickly. I’m starting to experience a little more soreness from my chest incision, but it’s nothing that a little Tylenol doesn’t completely get rid of.
There’s something that must be going on that I’m unaware of. My mom told my sister (and I - in the same text thread) that sometimes I look melancholy and it worries her. Here’s the thing. I’ve never been sad since I’ve been out of the hospital. I’ve been really happy actually. I told her to tell me when she thinks I’m sad, but she never really responded. It’s hard to talk with her because of the combination of her hearing loss and my coughing triggered by talking (or shouting when it comes to communicating with Mom). I guess we’ll find out in the future when we can text each other “in person”. I just don’t want her to worry, especially if I’m not sad.
I’m super happy. Super grateful to be here to experience everything in my simple daily life, and for all of you. I love each and every one of you.
Why Am I Hitting Myself? Saturday, December 18, 10:49 PM
I did a stupid thing today. I was pulling my hoodie sleeves up to wash my dishes, and I lost my grip and punched myself in my incision. Nice huh! Lesson learned. No more doing dishes and housework in general (Just kidding). I’ll have to be more careful. It didn’t really hurt, It just stunned me. I’ve been so tender and careful around my chest area. I must be healing really well, because it just felt like a normal light-ish punch in the chest with no lingering pain, burning, or stinging afterward. What could have been a lot of pain ended up being surprise message that I’m healing really well. [Happy sigh.]
I am still walking at least a mile a day. I usually walk way more, but I had to reduce it for the next few days because on one of my longer walks, my blood sugar tanked in the middle of the walk and I had to rest several times to recover. I got really light headed and when I checked my BGL once we got home it was in the low 50s and started affecting my eye-sight. I was seeing “auras” and my vision was slightly foggy. After I took a dose of glucose tablets, everything normalized. Odd thing is, when I tested my BGL a few hours later before my next meal, it was almost 200. These anti rejection drugs seem to be doing a number on my blood glucose levels. At least we start tapering off of them starting Monday!
I love each and every one of you.
Missed Another Post Today. Oy. Friday, December 17.
Clinical Day Number Three. Thursday, December 16, 11:53 PM
This week was week 3 of weekly biopsies (Monday) and clinicals (Thursday). Next week is week 4 and the final week of weekly appointments. After that, we start every other week. I even skip a day because of the holidays.
It’s hard to believe I’m toward the end of the first month of recovery. I waited so long for the procedure, imagining this time. Now it’s here, and I can barely believe it. Four months with wires and tubes poking out of my neck, and attached to a drip pole. Using a bedside commode, measuring my “output” in a urinal, and wearing a hospital gown 24/7. Now I’m in regular clothes and walking over a mile a day. Almost a mile and a half today. Whenever I get disappointed because I’m winded so quickly, I remember where I was a few weeks ago, and I can take breathing a little harder and having to stop and rest during my walk a little easier.
My clinical appointment today was great. All is going well, and aside from a few meds adjustments, things are still going strong. The doctor even said that at the clinical on Monday after my biopsy (number 4), we’ll start tapering down on my anti rejection drugs. They almost started that today, but then decided to wait until the official fourth week.
I’m still feeling grateful, still feeling healthy, and still doing my best to honor my new heart. It’s full of love. Love from my generous donor, from their family, and from all of the support I’ve been getting from all of you. I love each and every one of you.
Another Day, Another Mile. Wednesday, December 15, 7:25 PM
It was a crisp and sunny day which made for a very pleasant walk. I was able to go about a mile and a quarter today, so I’m slowly increasing my distance. I’m feeling quite happy with my recovery speed, and I’m just hoping things stay this way so that I can get back to normal life soon.
I’m finding myself missing and pining for things, foods, and activities. I feel the ache for them, but then I realize that I’m still here to miss them, and things are ok. I found that if I stick to gratitude, then it’s easier not having experiences like trips to Disneyland which used to be pretty often, full on pepperoni pizza, and briskly walking to actually exercise.
Focusing on being a good steward to my new heart helps me quite a bit with missing all these things. I keep in mind that they’re still in my future, as distant as it may be, and as moderated as they may be when they finally are within reach. I keep thinking of the letter I’ll be writing on May 21st, the 6 month anniversary of my transplant, and what I might say about how I’m taking care of their loved one’s precious gift. I’d like to be able to report good, healthy habits.
Tomorrow is my clinical appointment, so I’m NPO at midnight tonight, but it’s not as early as usual. My appointment is an hour later at 8:30 AM, rather than 7:30, so I get a little extra sleep in the morning. NIce. I love extra sleep, I love meeting with the transplant team and getting good news, and I love each and every one of you.
Biopsy Number Three. Monday, December 13, 11:58 PM
Today was my third weekly biopsy. Things went rather quickly, and I was out of there by 1:00 PM which is considered pretty early.
Dr. Kransdorf did the biopsy, and he’s really good. The procedure is done by going through a vein in my neck and inserting a catheter to check the pressures in my heart, and to take samples (usually 5) to examine and make sure all is well. As far as the pressures go, he tells me right away that everything looks good. The samples I usually hear about on Thursdays at my clinical appointment (which he also usually does).
I swear, he’s so good at what he does that I barely feel the process. It sounds like it would be painful, but it’s relatively painless. The weirdest part is that my heart skips a beat when the catheter goes through the valve. Sometimes it can cause an arrhythmia, which he can see, and checks in on me right away. My heart just starts beating like crazy, but it calms down pretty quickly. As soon as I feel it, now that I know what it is, I usually try to deep breathe and calm it down. It usually works.
After that, I have a chest x-ray, and an echo cardiograph. Then I go upstairs to the sixth floor to see the team about updates with medications and so on, and to ask any questions. Over all, it’s a very well organized and informative day. Next Monday will be my last weekly biopsy, then after that, I will have them every other week.
Of course, after that, I decided to try for my mile walk when we got home. Stacy accompanied me, and we did it. A little over a mile. It was harder today than yesterday, but I think that’s because I wasn’t wiped out by a biopsy and other procedures. We’ll see if I can walk tomorrow, but it’s supposed to rain all day. I can’t risk getting sick, so I’ll have to walk around the condo a lot. It’ll be weird, but worth it.
Thanks everyone for all of your support. It is felt every day, and believe me, it’s getting me through all of this. I love each and every one of you.
Rainy Day Rest. Tuesday, December 14, 11:49 PM
Today was a very restful day. It was really chilly out, and rained most of the day into the late afternoon. By then it was a little to cold and dark to walk. So I missed my mile. It’s weird, I want to exercise, but have to be so careful about getting sick or any infections. I can’t even do things that may ramp up my immune system, since that means “rejection” to my new heart. And believe me, it’s more than welcome, and I’m trying to make it as accepted and comfortable as possible.
Yesterday at my biopsy, one of the nurses asked me if they told me anything about the donor. I never really thought of that outside of donor identity, which I know has to be done very carefully, through the transplant coordinator, in due time. However, she asked me if I new if it was an older, or young heart, if it was male or female, and things like that. I never really thought of that. I guess they’re questions I can ask my team at my Thursday clinical appointment. I’m interested in knowing anything at all about my heart, and the person who gifted it to me. Even if it’s not the identity.
Well, here’s to tomorrow which is supposed to be cloudy with no rain. Hopefully it won’t be too cold, and I can do my mile or more in some sunshine (albeit partial). I’ve been getting some lovely texts from you, and I’ll be thinking of those who are walking a mile with me each day. I think that’s lovely and sweet to even think of, less actually do! Let’s all get a little healthier. I want us all to be here as long as possible. I love each and every one of you.
One Mile. Sunday, December 12, 8:24 PM
Today I walked one whole unbroken mile. It felt good, and honestly, I think I could have gone farther, but I didn’t want to be straining on the way back. That’s always the tough part about deciding on the halfway point. Turning back in time so I don’t push myself. Usually I have to rest on the way up and at the halfway point. But today, we just rested a short while before we turned around to head back.
I can feel myself getting stronger. I can feel my body oxygenating better and better. I’m still getting winded, but much later, and much less than before. After a mile, I felt better than I did after my walks in the hospital.
Tomorrow is biopsy number 3. I will be NPO tonight at midnight, and then I’ll have my biopsy tomorrow at some point. Check in is at 7:30 AM, but then you just wait until the surgeon and the team are ready for you. I was lucky last week as there weren’t many biopsies scheduled, so I was out of there pretty early. Tomorrow may be busier, but who knows. Holidays usually mean slower times and fewer procedures. We’ll see.
I have four weeks of weekly biopsies, then they go to every other week, then one a month, then one every six months. Every time I go in for one, I think of Janis Joplin singing, “Come on! Take another little piece of my heart now baby!” I know. Dumb joke, but it still makes me chuckle when I think about it.
It’s an early day tomorrow. I’m really happy with my recovery so far. Trying to do right by my gift. I love each and every one of you.
Happy Birthday Mom! Saturday, December 11, 1:41 PM
Today is a special day. It’s my mom’s birthday! She’s receiving a ton of Viber messages from the Navia clan in the Philippines, and she’s already opened a few gifts. I have a special Filipino dinner ready to be delivered (you have to have Pancit on your birthday), and a Tiramisu cake with candles to celebrate. She loves that coffee flavor.
My mom has been doing all she can to take care of me within her abilities. She’s my mom, and I’m already 51, so there are some limitations that she tries to overcome, and she’s doing such a great job. She’s been a trooper this whole time. She’s super attentive, tracks my meals, and makes sure I eat, exercise, and take my meds. She also does every bit of laundry in the house! I’m so used to cleaning (I actually enjoy it), that I’m still getting used to it when she just whisks everything away and cleans up after me.
She just took me on a walk outside, and we did .82 miles. I’m almost up to my goal of 1 mile which the doctors set for me. Hopefully I’ll be able to do a few mile walks each day. It’s hard not to push myself, but I take it carefully. It’s such a nice place to recuperate here in South Pasadena. I’m so glad I get to spend this time, her birthday, the Holidays, New Years, with my Mom. She truly makes it a special time.
Here’s to moms everywhere. And especially my mom who was born this day in 19## ahem ahem. She’s looking and feeling very healthy and happy. I hope I can help her stay that way.
I love each and every one of you.
Stronger and Stronger. Friday, December 10, 11:04 AM
I’m feeling really great. I accidentally skipped yesterday’s posting, that’s how much life is starting up again. As much as I love that, I still have a goal of posting every day. At some point in the day.
Yesterday I had a clinical appointment. I have 2 kinds of visits now, one on Mondays, and one on Thursdays. On Mondays, I have a weekly biopsy (for the first 4 weeks), as well as a clinical visit where they just check on me, my medications, and draw my blood for tests. On Thursdays, it’s just the clinical where they draw blood and check on me. Mondays are the long days because of the biopsy, which is usually accompanied by a chest x-ray and an echo to check everything, then I go to my clinical afterwards. Thursdays are the short days where the appointment is about an hour, and just the visit and blood draw.
Yesterday, it was a great clinical with good news that everything looks good. They adjusted a few of my medications, and this morning they called to adjust a few more according to the yesterday’s blood draw and tests. Now I’m set for the weekend.
A weekend which I promise to post every day. I swear it. Cross my brand new heart.
I love each and every one of you.
Yep, Missed Today’s Post. Thursday, December 9
Healing. Wednesday, December 8, 11:56 PM
Today was another good day. Shakiness wasn’t so bad, and I had a post-op appointment with the surgeon. A 5 minute appointment. It was mostly to check out my wounds. Dr. Esmalian took one look at them and said, “You’re healing so nicely, I don’t think you ever have to see me again!” Then his PA took out 4 chest tube stitches and I left. Quick, easy, good news.
I am feeling more energized now, although I still get winded easily. I can now get out of bed, or a chair without, “thinking about it” for 5 minutes first. The pain is lessening, and it’s a little less painful to cough. My back and neck still tense up, but Tylenol helps that a lot. So yes, the only pain meds I’m taking now are for my back and neck pain. My chest is totally fine. Incredible, isn’t it?
I have a clinical tomorrow morning for blood draws and a Covid test to be prepared for Monday’s biopsy (number 3). It’s my new reality, but I’m grateful and loving it.
I love each and every one of you.
The Scarab. Tuesday, December 7, 11:34 AM
Things are chugging along well here in the recovery house. I’m staying active, trying to walk a lot, and trying to maintain my levels through meds (sooooo many meds) and diet. The diet part is going ok, and the meds part is going really well. I’m finding it pretty easy to manage, maintain, organize, and take all the meds. I was never really worried about it, but I’ve never managed this many before. I have about 27 different bottles to look over and keep track of. But it’s going well!
I still am amazed at the fact that I am the new steward to this literally heart felt gift. I feel it beat at night, and for the first time ever, find it easy to meditate and focus on gratitude toward the family and the donor. I really wish that I could reach out and let them know how much love and appreciation I’m sending them, but I can’t until May 21st. That’s the 6 month anniversary of my transplant. At that point, I can contact the transplant coordinator, and submit to her a letter to the family, and the coordinator will let them know it’s there. Then the ball is in their court if they want to respond, or even accept the letter, or remain anonymous. I can guarantee though, I’ll be making myself available on the 21st of May just in case.
They have really gifted me transformation, rejuvenation, renewal, and a rebirth. I’ve found that these are all symbolized by the scarab beetle to the ancient Egyptians. I love that they used it in funerary art to represent immortality, resurrection, transformation, and protection. They were iconographic representation of the dung beetle which I also love. To think that their whole lives revolved around eating, laying their eggs in, feeding their young with little balls of shit just makes me think of the amazing things that we can do to turn things around, and/or see through different lenses. It not only represents my journey to a new heart, but also life in general, and how even though it can be just plain shitty sometimes, there’s something more there if you look.
One of my best friend’s best friends wore her scarab necklace thinking of me a while back. This is what started my little obsession with scarab beetles. I now have a beautiful enamel pin that is a scarab beetle but shaped like a human heart. It’s a really interesting graphic, and I love it. I wear it on my robe around the house now. I think it will follow me for quite a while.
I love each and every one of you.
I’m Now an Outpatient! Monday, December 6, 2:34 PM
Yes, I skipped yesterday. I was so nervous about my first outpatient biopsy that I forgot to post. Ok, not really. Honestly, things are going so well with recovery that I’m forgetting to update you since there’s not much news. Other than some blood pressure and sugar issues, I’m doing well and feeling so good! Im still amazed at how someone’s gift to me has given me such a new perspective and lease on life.
It feels so joyous to be an outpatient. I get a wristband, and as soon as I get home I can cut it off. It’s like a lifeline when you’re staying in the hospital. Mine got so old and beat up. When they couldn’t scan it anymore, they’d get me a new one. As an outpatient, I can cut it off the moment I leave. It’s just a Tyvek strip, but when you have it on you 24/7 it starts to become a symbol. And being able to cut it off means a lot.
I love each and every one of you.
Oops! I missed posting on Sunday, December 5!
Better Days. Saturday, December 4, 11:58 PM
Today was a much less shakey day than yesterday. Everything went pretty smoothly today and I had a much less painful day. I managed to stay ahead of the pain with Tylenol.
Tomorrow we will attempt to decorate for Christmas, and next week on the 11th is my Mom’s birthday. I’m healing quit well so far. I’m slowly increasing in energy, and Endurance.
Short entry today, but boring is good so far! I love each and every one of you.
Isolation. Friday, December 3, 10:35 PM
Today was a very shakey day. For some reason, the tremors were extra strong today. A few of the anti-rejection drugs give me the shakes and today they were pretty major, to the point where I felt unstable to walk. I just took it slow and walked around the condo where I could hold onto the wall for stability.
Other than that ,the day was great. I took a long nap, and ended up taking extra strength Tylenol today. I’m still on it, trying to get ahead of the pain (doctor’s recommendation). A lot of the pain is in my chest incision, and thus, cramping in my upper back and neck. Tylenol is actually helping to keep it toned down.
It was still a great day with my electric fuzzy throw, and spending time with Mom. Honestly, being out of the hospital, it will be hard to not have a great day.
I’m feeling free, yet still isolated a bit because I still have to remain behind closed doors since I’m on such high dosages of anti-rejection immunosuppressants. I can’t get any infections, and yet I’m very susceptible to them. I’ve spent a week with my Mom, and still haven’t been able to give her a hug and kiss yet. Safety first, i guess!
I love each and every one of you.
I’m Free! Thursday, December 2, 11:16 PM
I know it’s a very late post today, but the day was so chock full that this is the first opportunity I’ve had to write to you.
First off, YES! I was discharged yesterday and made it safely to the recovery rental where my mom was waiting for me! I walked around the apartment so much, way more than I walk in the hospital. I walked around a lot putting things away, yet keeping to my thoracic guidelines, no lifting over 10 pounds, and no bending to the floor (heart below waist).
I had the absolute best night of sleep in 4 months. In a comfy bed. In real pajamas. With comfy blankets and pillows.
This morning, I had my first clinical visit (I know, I’m out, then right back to the hospital), but it was only for an hour, then back to the recovery rental. I have a few days to just try and rest and exercise this weekend.
I am looking forward to it. I’m so happy that things are going well. My clinical appointment today showed that all is progressing so well. In the blood draw room, I actually met one of the other patients I would see walking around the hallways in 6 South while I was waiting. He got his heart a little earlier, and we both bonded over being blood type O+.
I am so happy right now. I have a barrage of about 25 bottles of medications, and it’s a challenge to keep them all straight, but Stacy is helping me get that all correct.
I do feel a little shakey now and then because of several of the anti-rejection medications, but my mom is here and helps me a lot just by helping me focus and rubbing my back and hands.
I have such great support. That includes you guys. I love each and every one of you.
One More Night. Wednesday, December 1, 7:14 AM
Well, what’s one more night after 4 months, eh? During all the teachings yesterday, the main transplant team came in and mentioned that my potassium levels were too high, so they wanted to keep me one more night to be safe. I was just monitored, and during the rest of the evening, they normalized. So I’m good to go. Today. I hope.
I’m waiting for the team again for their last visit. General dlscharge time is about 11:00 AM. Although it was a big let down, I was still able to see that they have my best interest at heart. I was also able to hold on to all of the gratitude I’ve been feeling instead of getting too disappointed.
I’m thinking there won’t be anything to hold me here in the hospital, and that the team will clear me to go home. I’m visualizing it. If I had a dream board, it would all be this picture I have in my head of walking outside for the first time in months. Or at least wheeling. I think I have to leave in a wheelchair. But that’s ok. Wheel me away!
I love each and every one of you.

Well On My Way

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Stuff. Saturday, January 29, 9:58 PM
Holy Moly. There is so much stuff to move to the apartment. So much stuff. I’m almost finished with everything in my room, and there’s not much anywhere else but the kitchen. But there’s still so much to pack up.
I’ve thrown away about 5 bags of “trash” or stuff I don’t want to transfer. I’m leaving some of the appliances and dishes and such that I bought for the place at the condo. All of that is new, and the owner is really appreciative.
I suppose 2 months of living has collected so many home comforts because coming out of a 4 month hospital stay, I was so desperate to have a normal life again. If there was something missing, I pretty much just ordered it from Amazon. That’s why so many new, useful things are getting left here. I already have them at home. For as much as I have to transfer, it was worth it to live a normal life these past few months.
This place has helped me heal so much. I’ve loved my time here like I love each and every one of you.
Skip Day. Friday, January 28, 10:07 PM
I am skipping today. Not much to report that I want to remember. All is well, still feeling strong, just frustrated. Until tomorrow. I love each and every one of you.
Packing It All Up. Thursday, January 27, 11:14 PM
As I’ve mentioned before, my time here at the recovery rental comes to a close this coming Monday. I’m in the midst of packing things up. It’s amazing what you accumulate in 2 months, especially when you have an Amazon addiction.
Even though I’ve only been here 2 months, I still get pretty nostalgic about things as I pack them. Recovery has gone so fast that it seems like I shouldn’t be so sentimental about this place already, but it has just been such a huge part of my healing that I can’t help but get a little mushy about leaving.
Don’t get me wrong, I’m so looking forward to moving back home and trying to resume my life again after 6 months. I miss home, but this rental has come to mean a lot to me too. Ah well, life moves on and things move forward. It’s getting to be time for me to move along forward with it all.
I love each and every one of you.
Walking Harder. Wednesday, January 26, 11:11 PM
What has two thumbs and walked over 2 miles today? This guy. I got to walk early this morning with Stacy. It was by far one of my favorite walks ever. We happened to walk at “doggie walking” time and got to say hello to so many pups. So many pups. Then, in the afternoon, Mom wanted to walk, so I did another walk at my normal time.
All this walking was great, but it really made my shins ache. I didn’t realize that my legs aren’t used to that much activity. It doesn’t sound like much, but for me, well, it’s quite a bit. I did feel good after each walk, but I made the mistake of napping after the second walk, and my legs kind of got a little stiff. It was easy to walk off though in about 15 minutes, it just was uncomfortable enough to not let me continue napping.
Between my walks, I got a call from the Kaiser team and got my first appointment with the Kaiser doctor, Dr. Howard. I’ll start seeing the new team on February 4, next week. It will be interesting meeting and experiencing everything with a team who didn’t go through all this with me. They only know me from my medical record. Although I did get to meet many of them before I left for my 4 month stint at Cedars.
Health-wise, I’m doing great. Head-wise, I’m feeling grateful and positive. All is going well.
I love each and every one of you.
Chasing Waterfalls. Tuesday, January 25, 10:23 PM
I didn’t stick to the rivers and the lakes that I’m used to today. Not that I had a choice. Today a deluge of water came pouring through the light fixture in my master bath. For about 2 hours. After about 1 hour, I found a bucket. It was a crazy day. Plumbing work was going on in the building, and this morning overflow from that overflow overflowed into my bathroom. It was a long day of mopping, sopping, dumping, then cleaning. The owner came in and personally used a wet-vac to suck up the carpet lake.
It may sound like I had a bad day, but it was kind of reassuring to know that I’m at a point in my recovery where I can think straight during an emergency. I was calm the whole time, and was able to make snap decisions. I surprised myself. I thought I would end up having to just sit and let my Mom handle everything, but my supervisor hat fell on and I just kind of took over. Had this happened even 2 weeks ago, I wouldn’t have been able to fully deal with the situation.
All is ok now. My 27 bottles of medicine stayed dry, and all that’s left of carpet lake is a little squishiness. I’m beat, but can go to sleep in a dry bed.
I love each and every one of you.
The Last Week. Monday, January 24, 11:57 PM
A week from today is the move out date from the recovery rental. This place has been such a huge part of my swift recovery. I completely comprehend how lucky I am to have been able to rent it. Next Monday, I move back to my apartment. Yes, I made a nice home for myself here, but I’m looking forward to my own room, my own stuff, and living with my cool roomie again. I’m hoping the elevator stays operational while I need it to. It’s very spotty, and at the moment stairs can still tire me out pretty quickly.
Next Sunday, my mom boards a flight back to Atlanta. I’m going to miss living with her. She’s done her best to take care of me, and I really appreciate all the time she put in to just live with me “just in case” anything should happen. She was pretty much my own private 24 hour neighborhood watch. One of the many wonderful things about my mom is how much I can feel that she loves me. All the time. Without fail. She’s so good at that, and it really helped me a lot over the past few months.
I’m at a point now where I don’t really need a 24 hour caregiver. That was a really strange experience. As someone who likes his independence and being on his own it felt very different not only to need a 24 hour caregiver, but to understand why and actually want one.
I remember my first walk outside the building here with Stacy. I was actually quite nervous. No nurses, and how ever far I went, there I was. If anything happened, Stacy would pretty much have to call an ambulance as an only resort. I went from walking in a hospital hallway with 2 nurses by my side, attached to monitors, drips, and machines to watch over my vitals, to walking on the street side with just Stacy and my cell phone for emergencies. I felt as vulnerable as I do when I have that nightmare about going to elementary school and realizing I’m not wearing any pants.
Two months later, it’s a completely different story. Not only am I totally secure in my pantdom, but I don’t feel helpless at all anymore. I can focus on the strength now more than the vulnerability. I feel I could move mountains. Well, very small, light, figurative mountains. Maybe with a little assistance. But they’ll move, dammit.
I love each and every one of you.
Everybody Cut, Everybody Cut… Sunday, January 23, 9:07 PM
I miss dancing. Unabashed, no one is looking, make myself laugh, boy band shaming, choreographic seizure-like, dancing.
I walk almost every day for a mile. It’s difficult to talk and walk for me at the same time because of my breathing, so my mom and I listen to music. She listens to Filipino artists on her phone, and I listen to different playlists on mine. I’ve recently been listening to the Encanto soundtrack, and the music makes me want to pop my hips and wiggle my butt down the street. Of course, I can’t even talk and walk, let alone dance and walk.
I miss it. I was never great at dancing, but I always enjoyed moving and feeling my uninhibited spirit happily floating around the dance floor. Or actually, more like on the set of the last NOTE play on closing night after the last performance. So much fun, so much craziness, so much family and love.
I’m well on my way to recovery now. I’ve got a wonderful, young heart. I’m told that exercise is the key to making it last for a long, long time. When I had my last clinical at Cedars, Dr. Kransdorff said to exercise, exercise, exercise. In my head I was hearing dance, dance, DANCE!
I hope to dance with all of you some time in the future. As you can tell I miss and love dancing, and I miss and love each and every one of you.
Oh There It Is. Saturday, January 22, 9:37 PM
Remember how I said in yesterday’s post that I was ready for the emotional reaction to the donor information I got on Thursday? Well, I’m glad I was ready. Still taken by surprise, but ready.
I was napping earlier this evening. It was already dark in my room when I heard someone crying. It was an adult female. She must have been outside to escape whatever was making her cry, or maybe just to get some air. But I heard her lightly even with my window closed. She sounded so sad. Then she made a phone call and moved away out of ear shot. I was thinking about what she could have possibly heard or gone through to make her so sullen. As I went through all the random things it could possibly be, I found myself wiping my eyes. And nose. My chest was heaving and I realized I was sobbing.
Whatever grief she was experiencing must have made it’s way into my conscious through her weeping and activated my grief. I held my chest as tight as I could (which is still not very tight), and I just wept. It lasted a few minutes, and after whispering “thank you so much” a few times, the sadness subsided and I began to recover.
It felt good to feel that. I mean it was sad and painful, but I was hoping I would grieve for my donor eventually. He was only 27 when he gave me this gift. It’s a strange grief that I’ve never felt before. It sort of honors me to feel it. I went through a lot of pain over the last few months, so it seems only right that I experience some of it for my donor and his family.
Well, I love each and every one of you. My literally young heart was in some ways recharged today with even more love to give. Pass it on to your family, your friends, even a stranger. Saturate the earth with it.
Young Hearts Be Free Tonight. Friday, January 21, 10:26 PM
You may remember from yesterday’s post that I had my last appointment with the Cedars-Sinai team. During that appointment, I found out a few details about the gift given to me by my donor. I am the steward to the heart of a 27 year old male.
I’ve been waiting for more of an emotional reaction to finding this out. It hasn’t really happened yet. The gratitude has swelled to incredible heights, and I’ve been thinking of and thanking the family more. I’m more eager than ever to submit my letter on May 21 and make my information available to the donor family. I’ve seen my gift several times beating on the screen of an echo, but I haven’t seen this yet while knowing this information. I’m sure the emotions will come when I least expect it. But I’m ready for it.
I love each and every one of you.
Another Month’s End. Thursday, January 20, 11:27 PM
Today was the last appointment of month 2 of recovery. It was also my last appointment at Cedars. I am so sad to say goodbye to that team. They were all truly caring, doctors, nurses, CPs (aides), everyone. They successfully set me up for a good recovery, and by listening to their instructions, my recovery is going so swiftly and so well.
As of tomorrow, I repatriate (that’s what they call it. I’ll be a “repat”) back to Kaiser, and my next appointment isn’t until a month from now. If I remember correctly, the team at Kaiser (aside from Elena, remember the Foley debacle?) was just as caring and attentive. It will be interesting to be working with a team who didn’t go through this process with me. They only know me by what’s on my record. Luckily, the Cedars doctors and the Kaiser doctors communicate weekly, so it’s not like they’ll be totally on their own.
It’s hard to believe it’s been 6 months of my life so far. I’m only at about 60% endurance-wise when it comes to walking and exercise, but I’m told that’s the slowest part of recovery, and it will indeed come back. I’m about 85% back when it comes to mental and “around the house” energy. I can focus so much more now, and I can do house chores pretty easily. Yay house chores! Yay house chores?
I know I say this a lot in these posts, but thank you again for sticking by me and all the support you guys send my way. I love each and every one of you.
Peanuts. Wednesday, January 19, 8:31 PM
This weekend, if you remember, I had my Halloween Re-boo. On Saturday night, I watched “It’s the Great Pumpkin Charlie Brown” and realized that I have a favorite line in the movie. It’s when Lucy tells Violet about Linus’ plans to miss “tricks or treats” and the Halloween party again this year. Violet, with her reflexive Rs, replies,
“Boy, is he strange.”
I love it. She sounds like an old Jewish mom talking about her daughter’s boyfriend. One of the big things about the Peanuts gang is their grown up language spoken in a kid’s voice. When little Sally’s list to Santa is compared to commercialism, her “I just want what’s coming to me. I just want my fair share” is my favorite line of the Christmas special.
Another thing I always admired in all the Peanuts specials is their independence. You never see adults with them. At the most you hear Dean Hubbard’s trombone communicating with the kids. The fact that Charlie Brown and Linus (and Snoopy) go to the big city, stay in a hotel, and navigate to a spelling bee in, “A Boy Named Charlie Brown” totally floored me as a kid. I just kept thinking of all the adult logistics they did all by themselves. I was a very dependent little kid who needed his parents any time he left the house. Unless it came to food, of course. I could cook a meal or order a pizza like a regular member of the Peanuts gang.
Things have come full circle over the past few months. I went from an independent adult to one dependent on Nurses, medicines, and machines, then later on care givers. Now I’m finally gaining some of it back. My strength is slowly overtaking my physical vulnerability. I have so many people to thank for that, including you guys. I love each and every one of you.
Eternally Yours. Tuesday, January 18, 9:45 PM
Last night, I watched Eternals on Disney+. I don’t want to give out any spoilers, but for me it was a mixed bag. I did like the character exploration, but all the backgrounds of 10 different main characters leads to a lot of exposition and pacing that seems to drag. But still, I was engaged for a majority of the movie, and I did enjoy it. It’s 2 and a half hours long. Is it me, or are all Marvel movies becoming epic time sucks? It’s like the story telling now encompasses biblical amounts of important information that can’t be edited. Can you imagine my blog posts being as long as a Marvel movie script? I’d still be waiting for a heart.
One of the things I liked about Eternals is how there is much more exploration into everyone’s flaws. Flaws in a character is what makes them interesting. I think this is what kept me engaged even though the pacing seemed really slow. I also liked having gay, deaf, and mentally challenged superheroes. It comforts me not only to see them on the screen, but to get totally engrossed in their stories so that these qualities are simply part of the character, not an entirety.
In my own little super hero world, I was able to walk my mile today. I didn’t save the world from Deviants or anything, but I did do what I set out to do, and kept up my exercise goals. That’s a great thing for me and my new heart.
Another mile tomorrow. I love each and every one of you.
My Bunions Are Tingling. Monday, January 17, 11:23 PM
Oh these stupid wet days. I didn’t walk my mile today because of the wet sidewalks and pavement which are like ice for my mom and me. Tomorrow should be better weather. I hope so.
It’s funny, I noticed that my left ankle gets swollen when it rains. I thought I was turning into one of those geezers whose bunions can predict weather. I kept thinking, “Is my left foot sucking in water from the wet environment?” Then I realized that the reason it swells is because I end up not walking those days. Of course, I do a few circuits around the courtyard, but not too many. What will the neighbors think? “A strange husky Asian guy keeps passing my window… This is like the fourth time. He’s wearing a hoodie. He’s obviously up to no good. He’s… he’s breathing heavy. Pervert.”
Well maybe not that. But that’s where my mind goes. Tomorrow we will try again.
I love each and every one of you.
Boo Again! Sunday, January 16, 9:28 PM
My Halloween re-boo felt like a success this weekend. I got to rewear my Halloween hat and pin accompanied by normal cozy loungewear instead of a hospital gown, and I broke out my little pumpkin tea lights which set the mood for my movie/tv viewing on a larger screen tv instead of a little 7” Kindle.
This evening I watched Halloween episodes of some of my favorite and/or nostalgic shows. I watched “Tricks and Treats” (Freaks and Geeks), “Nightmare” (Fantasy Island), and “Scaredy Dick” (3rd Rock From the Sun). All recommended. Freaks and Geeks is on Hulu (you do need a subscription), and Fantasy Island and 3rd Rock are both free on Tubi.
Earlier today Mom and I were able to walk my usual mile (just over), and I took a short nap on the couch. If you don’t know this about me, I usually nap for about 4 hours. Not 20 minutes. But I was hungry for dinner.
This all sounds like a boring day and evening, but it really was a great day with a lot going on for me. Although I’m slowly healing, I still can’t handle too much activity at once without getting winded. It can be frustrating, but I’m told that this is the part of recovery that takes the longest to return. It’s crazy how much the lungs and heart are connected.
I get a COVID test tomorrow for my Thursday biopsy. Getting up bright and early to try and beat the lines. Thursday will be the end of month 2 of recovery. Wow. I love it. And I love each and every one of you.
Happy and Healthy. Saturday, January 15, 11:54 PM
A rainy day it was here in South Pasadena. I was thinking about doing my walk, but then I saw all the wet leaves on the sidewalk and street and thought of me (or my Mom) slipping and falling. Tomorrow should be sunnier and dryer, so we’ll start walking again then. Another day another mile.
I am in the middle of my Halloween redo. I’m loving it so far. I watched “It’s the Great Pumpkin Charlie Brown”, and a movie I hadn’t seen before called “Bad Candy”. The former is a well loved classic, and the latter I almost turned off. I usually love horror anthologies (“Trick R Treat” is one of my favorites), but this one I really didn’t enjoy. I wasn’t engaged by the stories, and I didn’t care for the DJ “hosts” that tie all the stories together. I love my pumpkin lights though. Very festive, very warm.
I’m feeling really well these days. I still have tightness in my chest, but it’s slowly getting less and less. No pain. I’m physically able to do more, and my shortness of breath when I’m active is not as pronounced as it was just a week ago. I enjoy sleeping at night now as I can comfortably sleep on my side again (ahhhh). I still think of the past nights at the hospital and feel so comforted by the present conditions.
I’m recovering very well and feeling very content and grateful with my new heart. A new heart filled with love for each and every one of you.
Re-Boo. Friday, January 14, 11:57 PM
I’m slowly packing things away and getting ready to transfer back to the apartment at the end of the month. I came across the Halloween hat that I wore in the hospital and remembered that entire month and the whole heart pump scare that happened around then that sort of tainted my favorite holiday.
So I’ve decided on a redo. Or I guess a “re-boo”. I’m going to redo Halloween this weekend. I’m going to watch scary movies, eat some candy, popcorn, and snacks, light my little pumpkin candles, and wear my Halloween hat while doing it. The best part is, I’ll go to sleep in a comfy bed afterward. I will also not have a Swan catheter in my neck, nor will I be discussing a heart pump every morning. I’ll also be in regular clothes. No starchy hospital gown.
I didn’t get to watch, “It’s the Great Pumpkin Charlie Brown” this year, so it’s the perfect time for a re-boo. I love that special. And I love each and every one of you.
Hands Free. Thursday, January 13, 11:57 PM
My clinical visit today was short, sweet, and chock full of good news. I’m stopping one of my meds that cause my hand cramping, and reducing another that helps the cramping to “as needed”. Maybe soon I’ll be able to write normally.
It’s funny the things you can miss. I miss writing by hand and my handwriting. It’s something that I’ve always worked on it as a kid (and even as an adult), and with my shakes and especially the cramping, the meds have sort of taken all that away.
While I was at the hospital, I always had IVs or A lines in my wrists, and sometimes an O2 sensor on my finger. This always made it difficult to write. Now that all of that is out and my hands are completely free, they shake and cramp.
Now I’m tapering off the steroid that causes the shakiness, and finally I’m stopping the diuretic that’s been exacerbating my hand and leg cramping. I may still be isolating, but now at the forefront of my gratitude are being able to write again soon, walking outside, and sleeping on my side in a bed.
Oh, and you guys. I love each and every one of you.
Oh - My - Cron. Wednesday, January 12, 9:24 PM
Another mile walk today. Felt good, although I tried to increase my pace a little, and it (of course) made it harder. My breathing is actually slowly getting better. Although I did breathe heavier on the uphill parts, the downhill parts were actually calming for my lungs.
When I walk I wear a KN95 respirator to be safe. I keep my 6 ft distance from any other walkers, and I usually go around 2:00 to 3:00 because there are fewer people on the streets.
It’s so strange to be in heart transplant recovery while the Omicron virus is spreading so quickly. It’s like the regular rules of normal recovery are just a base-line now. I have to be so incredibly careful. On the plus side, everyone else is now wearing a mask and doing what I would normally do without a pandemic.
This is my new stress. This is the most difficult thing to be zen and patient about. I get worried about being precautious enough. Am I doing all I should be doing?
I’m isolating pretty extremely. I miss all of you. I thought I would be having visits with people here in the recovery rental, but I’m just concerned about getting any infections/sick, that I haven’t seen anyone unless they’ve been “Driving Miss Jay Jay” to appointments.
Well, I’m still thankful that I’m here on this earth to experience all this stress. And I love each and every one of you.
FLL MOLE. Tuesday, January 11, 10:47 PM
What has 2 unruly thumbs and walked a full mile after not walking all weekend? This guy. Or a FLL MOLE as I texted Stacy. It was very refreshing. I wasn’t as short of breath as I usually am. It feels good to be physically back, and even a bit better than before the angiogram.
Another cool thing about today: I found out that the nutritional value of regular vs. Honey Nut Cheerios is negligible. I get to eat more flavorful cereal now.
…and that’s about it for the day. I was about to talk about the weather again but decided against it.
Here’s to a good kind of boring. I love each and every one of you.
Nice and Boring. Monday, January 10, 11:44 PM
Yes, things are going steady and smoothly here at casa de recovery. I’m gaining my weight back to what I was before, and I’m getting stronger and stronger. I still get out of breath pretty easily, but I’m told that this will come back very slowly. It’s getting slightly better every day, and at moments throughout the day and before bedtime, I’m using my Incentive Spirometer (It’s in the glossary).
I had a great holiday break with Mom and Stacy, and just yesterday I cleared the house of all Christmas and New Years decorations. That kept me busy. And grateful.
This past season was pretty calm compared to other years, and I got to really look at all that I have. I’ve never really gotten to do that before. Usually my holidays are pretty rushed. But this year, there was a lot of sitting and reflecting.
Here’s what I learned: I have way more than I see on a daily basis. Not just material goods (which I have a ton of, thanks Bezos), but things like support, friendships, a deep insight unblocked by surviving a depression, an oddly incredible amount of patience for people and some situations, an extremely short fuse for smaller, less important situations, and hey, a brand new heart (both materialistically, and spiritually).
I’m used to being thankful for only half of these things. Mostly the things I see and my friendships. I’m glad I got to really look at, feel, and appreciate what my friendships have so generously given me, as well as the personal qualities that came down from generations, and sprouted from relationships. I am truly grateful for all of it. All of you.
I love each and every one of you.
No Post. Just Apologies. Sunday, January 9
Sing. Saturday, January 8, 10:36 AM
Restful. That pretty much sums up today, and probably tomorrow. I’m helping my femoral artery heal by tending to the entry point in my groin. Sounds weird, doesn’t it? The thought was funny in my head, and typing the words out and reading them makes me giggle.
I love laughing. I love hearing a voice speaking up. I think that’s why I love singing. I just watched Sing. Sing 2 is out, but I’m too cheap to rent it on streaming for $25, and I can’t go to a theater yet. But the original Sing embodies what I’m talking about. If you’ve seen it, you’ll know what I’m talking about.
The story lines revolve around a man (well, koala) holding on to his dream. This encompasses a son gaining his independence and love from his father, a heartbroken teen finding her inner strength, a house mom discovering her creative self, as well as a shy, quiet, stagehand overcoming fear and sprouting confidence.
They all accomplish these things by finding their voice. More than just their singing voice, but the voice of their spirits and souls. Everyone knows how easily my emotions bubble to the surface, so you won’t be surprised to hear that the end of the movie’s “we’ve got a barn, let's put on a show” scene makes me weep like a hungry baby. Highly recommended.
Now I think I will watch other “finding my voice” movies. Any suggestions? Any favorites?
I love your voices. Each and every one of them.
All Is Well. Friday, January 7, 10:16 PM
Today was a long but good day. I had my 6 week angiogram, and everything looks great. Immediately after the procedure, the doctor’s head appeared by mine and said, “Oh! You’re wide awake! You should have said something, we could have given you more sedative!” The first thing that popped to mind was “SEDA-GIVE?!?” Anyone? Young Frankenstein? Gene Wilder?
She continued by letting me know that all my arteries are clean, and as they did a biopsy as well (I mean, the catheter is already in there, why not?), all my pressures are great.
The difference today is that the entry point was through my femoral artery. This made the recovery much longer. I had to lie flat, no bending legs or lifting head, for 4 hours. Then I got to go home. This was nothing compared to my first angiogram where I had to lie flat like that for 6 days, then stayed in the hospital for 4 months. Needless to say I was totally fine with today’s recovery time. Totally fine.
I’m very relieved now that it’s over. I can’t really walk for the next few days until the entry point is completely healed. They did go through a main artery. It’s a good thing I was able to walk a mile yesterday with Mom.
I’m so wiped out. I can barely keep my eyes open. I am now going to sleep and dream about being able to see all of you again in person. I love each and every one of you.
Tomorrow’s the Day. Thursday, January 6, 11:36 PM
The last time I had an Angiogram was August 6th. On August 5th, I was quoted as saying, “I’m not so worried about the procedure, or what they’ll find…” Little did I know that what they found would keep me in the hospital until December 1, 4 months later.
I realize this is a completely different situation. It’s not exploratory, it’s just a check up. I have numbers, pressures, other results from the past month and a half which say I'm doing very well. The only thing I had as foreshadowing on August 5th was an ER doctor saying, “You’re a mess.” Quite a difference.
Despite that vast difference, I can’t help but be a little nervous (OK, a lot nervous) about tomorrow. In those early group texts about the beginning of it all, I made a (very) little joke about meeting the Irish messenger, Angie O’Gram. I hope she’s a lot nicer to me tomorrow.
I love each and every one of you.
Breaking Free. Wednesday, January 5, 11:07 PM
Still feeling stronger, still feeling grateful. Not much of an update medically, but as Dr. Levine always said, boring is good.
No outside again today. Just cement courtyard a bunch of times. Good news though, Mom says she’ll be up to a walk tomorrow. Even if she isn’t, I have a back up. I’ll go myself and let Stacy and Mom know so they can keep their phones nearby. So either way I’m breaking free tomorrow. I’m busting out. Out of doors here I come.
Not a very long post today, but I wanted to say, “Hello” to everyone. I love each and every one of you.
Outside. Tuesday, January 4, 11:19 PM
It’s COVID test day! This morning my uncle took me to Kaiser Pasadena for my pre-procedure COVID test. I have to have a negative test prior to my angiogram this Friday.
We got there early, and were fairly in front of the line, so we only really stood in line for about 25-30 minutes. I was worried about being in a walk-in line for a COVID test for hours. I wear a KN95 respirator, but still, I can’t get sick, and being around that many people for that long was a worry. Luckily, it wasn’t that long of a wait, and everyone was masked and socially distant throughout the line. Also, it was quasi-outdoors in the lower level of the parking garage. So I think I survived. I guess we’ll see in 2 days when I get the results.
I didn’t get to walk outside again for the same reason as yesterday (Mom’s neuropathy), but today I got a lot more walking in by just doing a bunch of laps around the courtyard of the complex by myself. It was boring, but exercise. But boring. I really need to walk outside. I’m missing it a lot. I’m tempted to just go by myself and FaceTime with my mom the entire way. It will make for a weird walk, but at least I’ll get to go outside. I still feel isolated, which is needed, but after 4 months stuck in a hospital room, really crave going outside each day. It really is more than “just going outside”.
We’ll see what tomorrow brings. Hopefully it brings a nice outdoor walk and a lot of fresh air. As fresh as air in LA can be.
I love each and every one of you.
I Have Confidence. Monday, January 3, 11:56 PM
Today was a lazy day. I didn’t really get to walk outside much because Mom’s foot neuropathy was acting up and she wasn’t able to go with me. I did do a bunch of laps around the living room, but I barely got out of breath. Maybe that’s a good thing? I think I walked maybe 2/3 of a mile today.
Tomorrow I get a COVID test for my procedure on Friday. I’m going to the Kaiser in Pasadena to get it done. Assuming it’s negative (I’ve literally gone nowhere), I’ll be all set for my Friday procedure which is an angiogram.
The last time I had an angiogram, I found out I needed a heart transplant and ended up in the hospital for 4 months. So as you can guess I’m a little tentative about Friday. I know these are different conditions and circumstances, but you know, conditioning. I’m sure all will be well if it’s like any of my other post-op procedures. Well I’m fairly sure. I’m about as confident as Julie Andrews standing in front of the Von Trapp estate’s huge iron gates. Oh help.
I will just have to think of you guys and how much I love each and every one of you. You help way more than a guitar case and a carpet bag.
Resolute. Sunday, January 2, (Kind of)
To start off, I wrote this post and forgot to publish it on the actual 2nd of January.
I know everyone talks about resolutions in the new year. Most people roll their eyes at them, some take them too seriously, and to some the they’re just a fleeting thought. This year I do have one resolution that I’ll be taking quite seriously, and that, of course, is to remain a good steward to my new heart.
I know I use that phrase a lot, but it fits so well, and it’s something that I truly want to be. So many times I’ve found myself missing things, like foods and experiences. It’s been a little easier knowing that I’m still here to miss them, and they’re not that far away anymore thanks to my new heart.
It’s still beating strong and adapting to its new home. Check ups are always good, and all the meds and the isolation are doing their jobs well in keeping my body appropriately healthy, accommodating, and infection free. 2022 will be about keeping things headed in the right direction. Oh! And also paying this recovery rental off of my credit card! Ha! Ok, 2 resolutions.
Wait, 3! I’m resolved to forever loving each and every one of you.
Happy New Year. Saturday, January 1, 2:23 AM
Since I’ve been posting so late, I’m considering this a post for 12/31 as well as 1/1.
I spent New Year’s Eve getting ready for the evening. I put up decorations that my sister had sent us (Thanks Dinah!), and I ordered a bunch of groceries and food for tonight and tomorrow. It was Stacy, my Mom, and me ringing in 2022 together.
Food-wise, we have Pancit (of course), Lumpiang Shanghai, and a bunch of Chinese take away (Thanks GrubHub!), as well as a bunch of finger foods that I ordered from Amazon Fresh, and Target Delivery. With all the noodles and “round” foods (we have a bowl of fruit as well - Filipino thing - ask Mom) in our spread, the three of us should be in for a very prosperous New Year.

It’s New Year’s Eve, and we’re watching the Times Square ball drop via YouTube. So it’s a few seconds ahead of actual time. The countdown made us cheer in the apartment, then 2 seconds later, fireworks erupt all over South Pasadena. From our balcony, you can almost see all of LA, and we got to watch a ton of fireworks right at the end of the countdown. It was really beautiful.
It was wonderful seeing 2022 in with Stacy and Mom. I’m so glad to still be here to see and experience it all. I still feel humbled by my second chance. And grateful. And honored. And incredibly lucky.
Happy New Year. I love each and every one of you.

Home at Last

FEBRUARY 2022 POSTS

Direct link to this month’s (February’s) posts:
https://msha.ke/jjbarrera/#february-2022-posts

I’m Still Here. Thursday, February 17, 11:29 PM
First off, yes, I’m still posting! There just hasn’t been that much to update as of late, and I haven’t had many insights that I thought were worth sharing.
I had my month three biopsy on Tuesday. Things are going very well and I’m healing very quickly. I’m down to my last week of the current Prednisone taper schedule, and I’ve already been told that after the next 2 weeks, I’ll be continuing on a new wean schedule instead of staying at this dosage for a while.
I got a message from my new Kaiser cardiologist, Dr. Howard, and he said all my tissue samples were normal. My pressures are all good as well, so I’m traveling down a good healing path.
I’m still walking my mile and a half. I just started an 8 week cardiac rehabilitation program through Kaiser. It’s all “from home” so I don’t have to go to a gym and expose myself to possible infections, or exercise with a mask (unless I’m walking outside of course). It’s pretty interesting. I wear a smartwatch that they sent me, and it tracks my exercise and communicates all the information to my coordinator.
That’s everything for now. I will try and post more often again. I’m trying to get back to posting again. There’s still so much cleaning and organizing to do, and I’m going pretty slowly.
Yep, I’m still here, and I still love each and every one of you.
Thanks. Monday, February 7, 9:37 PM
Things are going quickly with my recovery, and slowly with my unpacking and organizing. At least I’m moving forward, and my spirits are still up. As I’m filling trash bag after trash bag with trash or donations, I have the TV on, so I’ve watched many a movie and documentary that I normally would pass on.
This weekend I saw “Queen of Versailles” (included in Amazon Prime), a documentary about one of the 1% coming into money troubles as they attempt to build their mega-mansion inspired by Versailles which they saw on a trip to France. First off, their realtor mispronounces it more than once as “ver-SIZE”, and they actually modeled it after (actually copied) the top three floors of the Paris Resort in Las Vegas. It looks nothing like Versailles. It sounds like I’m making fun of them, but all this is announced proudly to the interviewer by David and Jaqueline Siegel.
David own(ed) the largest time-share conglomeration in the world. A business which he grew by taking advantage of all the cheap money that banks were throwing out until the crash in September of 2008. Needless to say, that’s when everything went south, and they had to stop construction on their dream estate.
Through the documentary, as things tumble downhill, David gets reclusive and Jacqueline gets desperate. You see the cracks in their marriage, their personalities, and their family life. At the end of the film, They’re still living a wealthy lifestyle in a multi million dollar home (which they deemed too small for them, hence “Versize”), and you still see the indulgent lifestyle they have in Florida. And they’re considering themselves “victims of the banks”.
One thing that really struck me, is the realization of how gratitude was a key factor in getting me through the last 6 months. At the end of the movie I thought, “Wait, this is their bottom?” As David works out in a home gym the size of a small state, and Jacqueline sits in her living room which has enough room to host a Live Nation concert, they’re both still complaining about money.
“Open your eyes dammit!” I kept mentally shouting at my TV. “You have SO MUCH. Yes, you have so much materialistically, but you also have great kids that love you! …and you still have millions!” Then I thought, “And you have your health!”
I’ve never really noticed anyone take their health for granted until I saw 2 people taking absolutely everything for granted. I wish I could send them some humility. I wish they could experience some true gratitude.
I don’t say this often, but I experienced a lot of difficult times recently. The thing that got me through them was a sense and feeling of thankfulness. I was and am grateful that I’m still here living a second chance thanks to a donor and his family. Before the transplant, I was grateful that my heart attack not only didn’t kill me, but came and went without me even knowing. And the whole time, I was grateful that the doctors and nurses were so kind, attentive, and caring. I was losing my heart, literally, and waiting for a new one. I was thankful that I was in line for one, and that everyone was cheering me on to get a new one.
Word of advice for whenever you’re feeing a little low. It’s not a panacea for depression, but it helped me so much. Look at what you have and truly be thankful. I’m not saying this will make you “feel better”, but it made me look in a direction that was more helpful than focusing on the pain. It wasn’t always easy to be thankful, and sometimes I lost it (and still do), but it’s a useful tool to have and to develop. It can give you strength through perspective, and it helps you be kind when you’re not really feeling it.
At least it did for me. I love (and thank) each and every one of you.
Surprises. Friday, February 4 11:16 PM
Today was my first Month 3 apointment, as well as my first visit with Dr. Howard. He remembered me, and all the people I came across on the transplant team thought I looked really good when they realized I had a transplant on November 21. It’s good to know that my recovery looks good even to those who didn’t go through it with me.
One surprise is that Dr. Howard said that my recovery is going so well, I’ll be going through a certain protocol with fewer biopsies. They wanted to limit my invasive procedures if I don’t really need them. And since (another surprise) my last few biopsies have been near perfect and not showing any signs of rejection at all, they can get the information they need through blood tests instead of biopsies.
He also said I will probably be weaned off of Prednisone faster since he bases the taper off of both an “every 2 weeks” protocol (like Cedar’s) and also biopsy results. So when I do have a biopsy, if the results are good, he’ll reduce the Prednisone then rather than wait the rest of the 2 weeks.
The final surprise was new information on my donor. Today I found out something really sad about my 27 year old, healthy, male donor. He was a victim of homicide. Around 11/20, he was shot in the head. Then Dr. Howard said, “But now he lives through you.” And that made me feel special, sad, honored, and many other things all at once. I thought of his family going through the holidays with their son/brother/father/etc. a victim of a homicide. It happened the weekend before Thanksgiving, so they went through all the holidays grieving.
I spent mine in humble gratitude, not even knowing anything about him. Finding out this detail about my stewardship is something I’m still wrapping my head around. As happy as I am to still be here, living a second chance, I’m still thinking of my donor’s family. I’m hoping I can live a life that would make him and his family happy. I realize that it’s “my life” still, but I can’t help feel like it’s “our life” at times. And I’m fine with that.
I am now even more excited for May 21, when I write that letter to the family and deliver it to the transplant coordinator. I can’t wait for the honor of being available to them if they’re ever curious about me. With all my heart, I love each and every one of you.
Quick Update. Wednesday, February 2, 10:56 PM
Today’s post is short and sweet. My walks are up to a mile and a half at a time, making my daily distance about 2 and a half miles. My blood sugar is on the lower end, so I think my next visit with the Endocrinologist will entail tapering off of some of the insulins I’m taking.
Yesterday was my “Pred Taper Day” which means I went down from 7 mg in the Morning and Evening of Prednisone, to 6 mg in the Morning and Evening. On February 16, I will go down to 10 mg once a day until further notice.
My blood pressure and other vitals are great, and I’ll be seeing my main Kaiser doctor, Dr. Howard for the first time on Friday.
I’m slowly unpacking my stuff and purging my room. Slowly. Making several trips to our dumpster per day involves many stairs which used to scare me. But my stability and endurance are greatly improved, so it turns my cleaning and organizing into a little exercise as well.
As you can tell, things are looking up. I’m super grateful and feeling closer to normalcy every day. Thanks to all of you for everything. I love each and every one of you.
First Night Home. Tuesday, February 1, 11:56 AM
Forgive the last few days of missing posts. I forgot how stressful packing and moving can be. It took 4 trips back and forth to get everything from the rental recovery to home. Stacy was a huge help, as I’m still moving a little slow, and unable to lift to my full potential. I’m much better, but not 100% yet.
Everything is now here, and the recovery condo is now clean and empty of anything I own. Last night I spent my first night in my own bed after watching TV with my roommate in my own living room. It feels so good to be home. Although I don’t think I overdid it, I did get super tired and worked pretty constantly packing and moving. I slept so soundly last night.
Today is the start of a new stage of recovery. And it starts with unpacking everything. And cleaning. I actually love cleaning. And of course, I love each and every one of you.

GLOSSARY

These are terms I tend to throw out there like they’re common knowledge. As atonement for my arrogance, I have created this glossary.

A-Line (Arterial Line)
A catheter inserted usually through an artery in the wrist which constantly measures blood pressures and can be used to draw blood. If you have an A-line, you usually have to stay in ICU for constant monitoring.
Bumex
This is a diuretic I’m on which draws fluids from my body and makes me pee. I usually have to go within about 3 hours of a spot dose which is injected into my PICC line or Swan. .
CI - Cardiac Index
The CI takes the cardiac output (CO) and formulates it into the height/weight of the patient to get a standardized number.
CO - Cardiac Output
How much blood is flowing through my heart. It’s usually a number based on the size/weight/height of the patient. A shorter, small framed person may have a CO of 3, where a larger, taller person may have a CO of 5. It just depends on how much the heart has to pump to circulate everything through their bodies.
CP - Clinical Partner
This is Cedars Sinai’s title for a Nurse’s Aide. They are very attentive and caring here!
Creatinine
Creatinine is a by product of Creatine which your kidneys are supposed to filter out and expel in your urine. If the level is too high, it GENERALLY means your kidney functions are compromised, GENERALLY because they’re may not be getting enough blood.
NOTE: I stress “generally” because that was the assumption my residents were making on the first week of October when they tried to force a heart pump on me. Turns out creatinine levels can also increase if you’re dehydrated. I was dehydrated. I didn’t need a heart pump. Adding a little water to my diet helped completely.
CVP - Central Venus Pressure
This is the pressure in an area of my heart. If it’s too high, it usually means my fluid is too much, and they need to give me more diuretics to get rid of excess fluid. I should be below 10 since my heart is so weak right now. Normal is usually 15-30 (I think).
CVP Line (Part of Swan Ganz catheter)
This is a line that goes to a certain part of my heart (different from the PA line). It is used whenever they need to draw blood for lab tests instead of “poking” me.
Heart Pump
A general term for a medical assistive device which is generally inserted through the right leg femoral artery (groin area).
I had one for 6 days after my initial angiogram on August 6. I was bed ridden and had to lie flat 100% of the time. No bending my leg, no lifting my head. Eating was a challenge, which was fine because I never wanted to eat to avoid using the bed pan as much as possible.
As of 11/8, I now have a balloon pump, but it’s axillary, not femoral. I am more ambulatory with this version.
More on the pump I had…
More on the balloon pump I have now (Axillary)
Incentive Spirometer
A plastic breathing exercise which helps with the expansion of the lungs after surgery. I do 10-12 inhales through the device every hour. It helps quite a bit. I can feel my lung capacity getting better each day.
Inotrope
An inotrope is a drug that affects how hard your heart pumps blood. Positive inotropes make your heart beat stronger (I’m on 2, Dobutamine and Milrinone), and negative inotropes do the opposite.
Lasix (Furosemide)
This is a diuretic I was on that helped get rid of my severe edema. It was administered through a drip and it made me go every 30 minutes to 1 hour. All day, all night. It got rid of all the fluids in about 10 days. It’s an amazing drug.
Metolazone
This is a second diuretic I have been spot taking which works on a different part of the kidney than the Bumex. I have been taking this in pill form.
NPO (Nothing Per Oral)
NPO is an order given by doctors. It means no food or liquids (including water, medicine, etc.) by mouth. This order usually starts at midnight before a surgery or procedure. I hate these letters.
Numbers (both procedure and result)
Numbers is the short term for the Cardiac Output monitoring process. It’s about a 20 minute process where I lie flat and they “zero me out”. Then a cooled saline solution is sent through my Swan and it measures how much my heart is pumping by tracking that temperature change through my heart beats. It’s pretty ingenious. The results are my more accurate CO and CI numbers.
PA Line (Part of Swan Ganz catheter)
This is a line in my Swan Ganz catheter that goes directly to my pulmonary artery. They use this to draw blood once a day. Blood from this part of my heart is used to measure how well I’m oxygenating. It’s also called a “Blood Gas Draw”.
PICC line
A Peripherally Inserted Central Catheter line is a thin tube that enters my arm and goes through a vein to the larger veins in my heart. It’s used to administer drips and medications, and can also be used to draw blood. I have a dual PICC line, which means there are 2 ports sticking out of my withered, old-man bicep.
Swan - or Swan-Ganz Catheter
This is a device which goes into my neck and measures heart function. They can also draw blood and administer meds through the tubes sticking out of me. It’s like an external extension of my circulatory system. This was invented here at Cedars Sinai by Drs. Swan and Ganz.
More Swan info and photos…

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So… What Happened?!?

JJ needs a heart transplant. That’s what happened.

Here’s How It All Started. (the group texts)

UPDATE 1: Thursday, July 29, 11:44 AM

UPDATE 2: Thursday, July 29, 8:00 PM

UPDATE 3: Friday, July 30, 1:21 PM

UPDATE 4: Sunday, August 1, 6:00 AM

UPDATE 5: Tuesday, August 3, 10:02 AM

UPDATE 6: Tuesday, August 3, 11:45 AM

UPDATE 7: Wednesday, August 4, 12:34 PM

UPDATE 8: Thursday, August 5, 6:28 PM

UPDATE 9: Saturday, August 7, 6:50 AM

UPDATE 10: Monday, August 9, 9:10 AM

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Here’s the Rest of the Story…

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Anxious Night, Achy Morning, Lovely Day. Tuesday, August 31, 7:22 PM

A Return to the Tunnel. Monday, August 30, 8:30 PM

A Day of Rest. Sunday, August 29, 11:10 PM

Food and Fevers. Saturday, August 28, 10:47 PM

Fevers, Frolics, and Famine. Friday, August 27, 8:41 PM

A Best Friend and 2 Laps. Thursday, August 26, 7:45 PM

Amazing Discoveries: Disposable Undies. Wednesday, August 25, 7:54 PM

New Room, New Floor, New Phase. Tuesday, August 24, 7:28 PM

I Dream of Underwear Monday, August 23, 8:46 PM

An Unexpected Ordeal Sunday, August 22, 10:15 PM (update 2)

A Decision is Made. Sunday, August 22, 7:26 PM

Where’s the Flashlight in the Night? Saturday, August 21, 9:15 PM

And Whaddaya Know. Friday, August 20, 7:25 PM

Bears of the Bad News Variety Thursday, August 19, 7:56 PM

I was radioactive. Wednesday, August 18, 8:04 PM

O Cedar Makes Your Life Easier… Tuesday, August 17, 6:47 PM

Transfer to What What?!? Tuesday, August 17 12:59 AM

Colonosco-What What?! Sunday, August 15, 9:15 PM

Lunch with Filipino Princess Leia Friday, August 13 11:30 PM

Who the What What? Thursday, August 12 at 11:26 PM

Who the What Now?!? Wednesday, August 11, 9:10 PM

What’s going on now??? Wednesday, August 11 at 1:15 AM

The Rest of the Rest of the Story

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Bye Bye Balloon (pump) (for now). Thursday, September 30, 10:23 PM

From the Pit of My Stomach. Wednesday, September 29, 11:48 PM

Congratulations, It’s a Girl! Tuesday, September 28, 11:57 PM

Neunundneunzig Luftballons. Monday, September 27, 10:29 PM

My Two Sisters. Sunday, September 26, 7:25 PM

Death 2021: Smaller and Compact. Saturday, September 25, 8:03 PM

Blood Sugar and Sweet Mom. Friday, September 24, 11:55 PM

Residents. Why? Thursday, September 23, 5:35 PM

Like a Frikken’ Broken Rubber Band. Wednesday, September 22, 9:56 AM

Like a Frikken’ Rubber Band. Tuesday, September 21, 8:13 PM

Just What Makes That LIttle Old Ant…. Monday, September 20, 10:36 PM

Whoops! Sunday, September 19

A Series of Naps. Saturday, September 18, 11:57 PM

Waiting Patiently. Friday, September 17, 10:23 PM

I Still Hate Swans. Thursday, September 16, 8:44 PM

Swans are Horrible Birds and I Hate Them. Wednesday, September 15, 9:35 PM

Many Roads to a Transplant. Tuesday, September 14, 9:34 PM

A Summary of My Condition. September 13, 8:17 PM

Our Medals of Strength. September 12, 10:59 PM

The Rest of the 75%. September 11, 9:20 PM

Oh THAT’S What That Is. September 10, 9:50 PM

What is That? Thursday, September 9, 9:06 PM

Doctors and Scans. Wednesday, September 8, 9:01 PM

That Was a Nap? Tuesday, September 7, 10:49 PM

Just Waiting. Monday, September 6, 8:17 PM

To Walk Or Not to Walk. Sunday, September 5, 7:45 PM

An Entire Tube of Chapstick. Saturday, September 4, 8:37 PM

Confusion Abounds. Friday September 3, 5:07 PM

I’m Unremarkable. Thursday, September 2, 7:58 PM

What Am I Waiting For? Wednesday, September 1, 8:15 PM

The Saga Continues

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Happy Halloween! Sunday, October 31, 7:27 AM

Until Next Year. Saturday, October 30, 10:48 AM

Heading into Halloween. Friday October 29, 10:46 AM

Back to Stable. Thursday, October 28, 9:46 AM

Ace week. Wednesday, October 27, 8:46 AM