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Sat, Jun 6 11:43am · Liver transplant support group in Transplants

Hi Brandon! Congrats on a successful transplant. I had my liver transplanted 13 months ago and was told not to do any exercise for the first few months. I had to walk up and down stairs, which took a lot out of me—I was 39 and in really good health other than the whole acute liver failure, acute renal failure, and acute respiratory failure thing—but did help me re-gain strength and mobility. I also did a lot of PT at home (asked the hospital PT staff for tips before I was discharged), specifically to gain enough strength to sit up and stand up without rolling on my side or twisting and depending on my arms!

My point is: The strength will come back slowly but surely just by re-training your body to do everyday “normal” things. Or maybe you’ve already passed that hurdle (congrats if so!). I totally get the anxiousness, but you don’t want to push it.

Resistance bands are great but make sure your doctor agrees this soon post-surgery. Even if your staples are out, there are still a lot of internal stitches (and scar tissue), and the last thing you want is to rip those or—God forbid—get an incisional hernia. I hear those are painful 😬

Have you tried planks? Those worked wonders for initially rebuilding my overall and, most importantly, core strength. But ask your doctors first! 😁

Tue, May 19 9:15am · Post Transplant Surgery and Early Recovery: What's normal? in Transplants

My family is extremely supportive, as are my friends, and probably more vigilant than necessary. I’m only “allowed” to be around my mom, brother, SIL, and nieces. My dog and I go on drives so we can both put our heads out of the window 😂. I’m a bit frustrated because I had to move into my mom’s house—can’t live alone for one year post-transplant—and had plans to move into an amazing apartment but had to cancel that plan once this hit. I feel like a brat even complaining since I’m very fortunate to be healthy and have a safe place to live.

Regarding my healthcare, I go to LabCorp once a month. I was worried at first but they are amazingly safe and aware. I can’t go to Georgetown because my doctors want to keep me away from any COVID patients, so my clinic appointments are all tele-health at this point.

I’d like to add one note to the hacks/tips and tricks: I have a 7-day pill set that I fill every week so I only have to carry one day’s worth at a time, and I set a reminder in my phone (8am, 12pm, 8pm) just in case.

Mon, May 4 4:32pm · Post Transplant Surgery and Early Recovery: What's normal? in Transplants

I honestly never thought about it—I assumed it was the temperature in my mom’s house—but yes, I definitely have hot flashes. Post transplant, I used to wake up multiple times every night while I was still undergoing dialysis and my kidneys were deciding whether or not they wanted to awaken and participate with my new liver (READ: to pee), so I can’t remember if the hot flashes were also a factor. As of today, though (one year on 5/10/2020!), the hot flashes are the obvious variable.

(So thank you for asking this question bc I never knew to ask it and now I know what I didn’t know I needed to know! 🙃)

They don’t wake me up every night but when they do, it’s only once or twice. I also wake up earlier than planned most days because I’m way too hot. Even in the winter.

My suggestion is to point a fan directly at your bed. On high.

Congrats on a successful transplant! I promise it gets easier 😊

Tue, Apr 14 8:42pm · Liver transplant support group in Transplants

I don’t know if this warrants a “nice to meet you” or a “so sorry to meet you in this manner” but your story hits very close to home: I also had no idea I was sick. One weekend I was spending time in NYC with my childhood best friend; the next, I was in the hospital. The doctors had no idea what was wrong and I thought I had just caught the flu that had been going around the office. My diagnosis began with pneumonia and changed to autoimmune hepatitis, acute renal failure, respiratory failure, and acute liver failure throughout the course of one month. (Yes: one month.) I was hospitalized on April 5, 2019, and placed on the list May 5, 2019, with a MELD score of 39. It took multiple MRIs, CT scans, X-rays, ‘oscopys, IVs, blood tests, and 17 blood transfusions to arrive at those final conclusions. I had a liver transplant on May 10, 2019, with an understanding that I’d probably need both kidneys transplanted as well. I spent a few more weeks on dialysis post-transplant. Eleven months later, so far, so good!

It’s frightening to know that the physical I had one year before didn’t show anything. It’s frightening to be told “you have five days to live.” It’s heartbreaking to know that people stay on these lists for years and live in fear for years, yet I spent five days on the list. It was surreal to be told, “The good news is, you’re at the top of the list; the bad news is, you’re at the top of the list.” I feel grateful and guilty; happy and sad; but above all, feel blessed.

Heavy but true. I know you’re 4 months out. I promise you it will get easier.

Tue, Apr 14 8:57am · Liver transplant support group in Transplants

My hair fell out in chunks—I jokingly told my mother she could make voodoo dolls of me after each shower—but as my NP predicted, it was only temporary. As someone with very thin, very fine hair, I was really freaking out and couldn’t care less about the “temporary” because I didn’t have enough hair to begin with! But I will say that Biotin worked wonders, as did time, and my NP was right: I eventually stopped shedding and pulling out chunks of hair when I showered, and thanks to Biotin (which I still take), my hair is growing back in. Unfortunately, I was told that Prograf was the cause—the one I can never stop taking—but fortunately, Biotin kinda tastes good 🙂