Overdue is an understatement for this update. I can’t believe after months of trying to get this site back up, I am finally writing. There were plenty of times I was ready to give up and go through the process of starting a new one. Now for the update:
If your only exposure to my life has been reading my posts on here, you are in for a big surprise. I’ve received a “replacement transplant” on June 22nd, 2020 at Cedars-Sinai Hospital in Los Angeles, CA. This latest chapter started on May 11th, I had not slept well in a long time, but the previous night I was awake most of the night feeling as though I would suffocate when I laid down. I called my doctors and was directed to go to Orlando to get evaluated. I never expected that I would end up being over 2500 miles away from home for months, with a new organ in my body. This experience has been surreal, but that is what my life has become over the past 5 years.
Assuming that most of you have followed my story since I’ve gotten to Los Angeles, I will focus this post on the past couple of weeks. In the future, if there is interest, I can write more posts, more in-depth of some of the things I went through and experienced in the hospital. There ended up being some periods when I went quiet and didn’t update much, including family members about what was going on. I was not in a condition to post, or text and at times, I couldn’t hold a cellphone or read. I will talk about those times in a future post.
The night I was discharged from the hospital I had been in a hospital room for 2 months, with very limited ability to exercise. So my muscles had atrophied tremendously. Another side effect I seem to get after being in the hospital for an extended period is that without walls nearby, I lose depth perception along with a small case of vertigo that lasts a day or two. After we left the hospital, I needed some last-minute essentials that came up during discharge. Since there was a CVS about a block away from the hospital, I masked up and grabbed my sanitizer, excited to finally feel like I am part of society once again. Walking in the hospital got my confidence up to do the same in public, so I was surprised when I got out and underestimated the slant in the parking lot. You know the one that’s a very small grade, that only exists to ensure water doesn’t pool when it rains? I walked forward a step and to the left a step for the first three steps. A pretty solid way to reintroduce myself back into society if I do say so myself, but fortunately I accounted for abnormal walking surfaces fairly quickly. Next was the step up from the parking lot to the curb onto the sidewalk, one step…and disappointingly more difficult than I hoped, but I made it. The rest of the walking in the store and back to the car went well, but I felt myself getting tired from all of the activity of unexpectedly being discharged that day and walking in a non-controlled environment.
The drive from the hospital to the long-term AirBNB that we are renting is about 20 minutes if the traffic is light. So I had some time to recover while my mother drove me. When we get to the rental, I grab something really light to carry up the stairs. As I turn slightly to the right and just begin to look at the stairs, my legs went out. Thankfully the host of the AirBNB was right behind me, so he reached out and helped ensure I landed a little bit lighter on my butt. From that moment I knew this was going to be a little tougher recovery in just one area. Muscle strength. It was the longest I had been in the hospital for 2 months and they say that for everyday you stay in the hospital, it takes 1 week to recover. I was able to make it up the stairs that night without anything in my arms and using my arms to pull gently to get to the top. It was a wake up call after having almost all good news for weeks. I had to plan my life around stairs and question if I could make a steep hill or ramp. However, the steep hills and ramps actually helped me build the muscles to get to where I am today. I RAN up some stairs a couple of weeks ago! I have had so many times in my life where the basics were gone, like walking and relearning that, or being able to shower, being NPO (no drink or food) for 2 days in the ICU. So when I ran up the stairs, I felt on top of the world. The added excitement was that I had not been able to move my legs that fast since my rejection episode fall/winter of 2018.
Along with running up the stairs, we regularly find things to do to make the daily exercise less monotonous and so often, it means walking farther, even when it seems too warm. Some of the greatest things we have seen were Malibu Creek State Park, Malibu, houses from famous movies and shows, the art district and countless other street art installations, LaBrea Tar Pits, Silver Lake Reservoir, Chinatown, we’ve walked A LOT around Koreatown since that’s where we are living. I may have missed some more, quite a few we have posted about, others we have not. These may become future posts in themselves, as I have learned quite a bit about history and culture of the area.
As you can imagine, and I hope understand, this post is very hard to write, from both the idea of where do I start back up and also the emotions of it all. Thankfully I have accomplished more in the past few days at coming up with something to write and I’m finding the therapeutic benefits of it. So I hope this continues, but with all of that said, there is a strong chance this post seems disjointed more than usual, as I have wrote bits of it here and there.
So for the most recent medical update. My pressures in my heart are excellent as two separate doctors have told me this morning. My Ejection Fraction was at 74%, which is the high end of normal persons ejection fraction. I can tell it too, I have energy to do things. Rather than coming up with lofty dreams, that to a sick person amount mostly to if my life was completely different, I come up with goals of doing something with my mother and achieving it. I’m actually excited to do dishes and cook, because it helps my depression, anxiety, isolation, PTSD type symptoms that I have been experiencing.
Today was my appointment and biopsy day, so I don’t have those biopsies back yet, however they have shown zero rejection so far. Even while they are weaning down on my prednisone. As a side note, that is the same as my last transplant, so there is no guarantee that the outcome will be any different at this point. But this time and this transplant center, they do pull antibodies as part of their protocol on a schedule. So far those are also good. Even side effects I dealt with before seemed to have gotten better. My creatinine is holding at normal, healthy person levels. I don’t have the headaches that I used to, so maybe I won’t need the Botox injections in order to stop the migraines, or even any medicine at all for that matter.
The only problems that I am currently dealing with is a muscle or bone issue in my left chest, for which I’m currently sitting in the room to be seen by the surgery team (for over an hour). The transplant cardiology team tell me that the pain is common among patients at my point after the surgery. My pain doctor says the same thing. But to me, it seems to be getting more intense, rather than better, which could entirely be just different activity. My idea to request to get surgery’s opinion on it was that if something is wrong, let’s get it fixed right away, before we learn it’s something bigger and will take more to deal with it. The second thing that I’m dealing with, is a dermatology issue on my right elbow. Small…ok large lumps keep popping up on my elbow and don’t seem to want to go away. So I will be having a dermatology appointment in the future.
The final thing that I will wrap this post up with is one of those things that I feel most people want to hear about in transplant patients. Earlier this week, I got a call from my team saying the donor’s family has wrote a letter and I have the option to accept it or reject it. While she was talking I thought, “why would she even ask? It seems obvious that you would take the letter” by the time I went to open my mouth to respond, my voice cracked and my thoughts were whisked away.
The reason my transplant team called to inform me that the family wrote the letter is because it’s a very structured process for the donor family and the recipient to meet. Obviously it’s all for privacy and safety, and it makes sense. But as a patient, I’m told so little information about the heat and the donor, that all I got was it was a match and a long with a couple things like, “He was a bigger guy so the size should be a better fit this time.” I asked if it was a CMV negative heart and it turns out that it was. I asked if there was anything appeared to make it a risky heart and they said, “No, it appears the donor took very good care of themselves and did not partake in risky lifestyles”. So that was it, that’s the amount you get to get a new important organ placed in your body. The rest of it falls on communicating with the family. Before I was told to not communicate within a year of the transplant because that’s when things have a higher risk of going wrong. So I didn’t even think about it, and by the time I got to the second year, I ended up having a number of problems regularly, so I put it off till things settled out. The idea being that it can be hard on the donor family if they see their loved ones organ not doing well. So this is the first time I am dealing with this side of it. Since the letter will be here soon and with so many emotions I will continue this in a whole new post.
To sum up this post, I am going to ask you who read this what topics you may be interested in my perspective, my experiences, questions about health things, etc. I have even thought about doing a post purely answering questions about transplant stuff, living with a transplant, anything related to life as a transplant patient, or anything that maybe interesting. Obviously keep them appropriate if you want them truly answered. Just comment on here, or shoot me an email at brandonschmidt@brokenbeatblog.com.
Also published on Medium.
