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Liver transplant - Let's support each other

Transplants | Last Active: 1 day ago | Replies (1623)

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@tjgisewhite

@rosemarya good morning. I am doing well except for massive weight gain(almost 40lbs) and my hair is thinning so much. Today is my last day for prednisone thank God. Thursday 4/16 will be my 4 month mark. I'm praying that I will get off some of these meds and maybe I will stop losing my hair and stop gaining weight. Any ideas or suggestions from you or the group would be wonderful. Please don't lecture me on eating or exercise because I already do all that. 😀Thank you for checking up on me.

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Replies to "@rosemarya good morning. I am doing well except for massive weight gain(almost 40lbs) and my hair..."

@tjgisewhite hi there! I was leading your post and saw that we share a few post transplant symptoms. My one year anniversary was Nov 28, 2019. I also had been on prednisone for the first few months but by the 5th month I was off all medications except for 1mg tacrolimus every 12 hours. I had gained about 40 lbs as well and my hair was thinning rapidly. I had a very health diet but couldn't really excersice until about 6-8 months after surgery. For my hair I took Biotin orally every day for a couple of months. My hair is thicker now and has stopped falling out. I signed up with a personal trainer beginning of this January and go (went) to the gym 3 x a week. I am so much strongest and the weight has started to drop (although slowly). For the first full year I believe my body was adjusting to the changes and recovering from the battery of drugs I had to take. Be patient if you can. Your body will realign itself and will get back to a steady rhythm at its own pace.

@tjgisewhite, Good morning to you, too. The words, "doing well", are wonderful to hear! At 4 months, will you be able to have a routine 4-mo post transplant check-up? When I reached my 4-mo point I was able to postpone it because of our son's wedding, so mine was a 5-mo check-up.
I also had thinning hair and even thinning/fragile finger and toe nails after transplant. I asked the dermatologist about it at my check-up and was told that I could take over-the-counter Biotin supplement. I suggest that you could ask about it and maybe it will help.
You will not get a lecture here on Connect, because we are all patients who 'Get it'. Each of us has experienced similar issues, and it is by sharing our experiences that we can support one another. Your question and your experiences are always welcome here because it helps all of us learn more about our own care.

Did you know that in addition to patient discussioins, there is a Pages section on Connect? In the Pages, you can read the information that is presented by the transplant staff. I am including some links -

-Top Transplant Hacks: Patients Share Their Best Tips and Tricks
(I am especially proud of this link because the staff used our group discussion, and the ideas that our members shared to compile this article)
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
-Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed-post/self-care-tips-for-transplant-patients/
-Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It
https://connect.mayoclinic.org/page/transplant/newsfeed-post/weight-gain-after-transplant-where-does-it-come-from-and-how-to-get-rid-of-it-2/

@tjgisewhite

The race after transplant is the race of the tortoise, not the hare!

Imagine that someone you love over the last year has endured:
* the trauma of organ failure
* surviving major abdominal surgery
* adjusting to life on a cocktail of drugs
* disruptions to their family life
* facing their own mortality
* financial fallout from a major illness
* etc.
* etc.

You've been through a lot and sound pretty amazing to me. 🙂

P.S. Vitron C (a mega iron supplement) was prescribed to me after transplant and helped when my hair fell out.

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 🙂