Liver transplant - Let's support each other

@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/

Hi @gaylea1 Thank you so very much for responding. I'm glad to know it's not just me dealing with weight gain and hair loss. I told my coordinator if I didn't have thick hair to begin with, I'd have bald spots by now...lol. I will certainly ask about the Biotin and hopefully that gets approved and I can begin taking it. I have access to a gym and trainers as well, but all of that is on hold for now. Unfortunately, when it comes to my weight, I am not as patient as I should be. I told my husband the other day I was fat and ugly. He was very upset with me. Anyhoots 🙂 thank you again for your response. The best of luck to you with your continued recovery.

@rosemarya Thank you so very much for your response. I will ask about the Biotin. If I am approved to take it, I certainly will. I have my 4 month check up on Wednesday 4/15. Hopefully, they will take me off some of the medicines or at least lower some of the dosages.
I am also diabetic, so that plays a huge role in all of this as well. The links you provided are certainly helpful. I will keep you updated on my progress. You are wonderful. Thank you for all your advice and support.

@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.

@jolinda Thank you so very much. That was so sweet of you to say. I did not think of it that way, but you are correct. I will also ask about the Vitron C and see if that is something I can take. Have a great evening.

@stella25 That's excellent that he is now happy with his new transplant center. We were not happy with the first transplant center that we looked at, recommended by my PCP, so I did my own research and chose Mass General in Boston. We could not have been happier than we were with the care there, and it still continues.
It really is so important to be comfortable and confident of your transplant center. Hopefully he will be transplanted some time relatively soon. Is his MELD getting high enough yet to make him a potential candidate soon?
JK

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 🙂

@jsw thank you so much for your reply. The remark about voodoo dolls is cute. You are now the 3rd person to suggest the Biotin. I am going to inquire about it and see if I can take it. Yes, I also found out it is the prograf that is causing it, which just happens to be the one they ( the Dr.s) are adjusting constantly to get right with me....gggrrrr... 🙂

@jacqualin Your story is amazing! To have a MELD so high and not have been aware of having liver problems seems very odd. When I was finally diagnosed my MELD was in the teens and I was told by the hepatologist that I had probably had NASH cirrhosis for 10 years, which fit the onset of some symptoms I had that had not been diagnosed as being from liver problems -- low platelets, recent diagnosis of diabetes when there was never any in my family, shaky hands, and the biggie -- HE episodes. It took about a year and a half for my MELD to get high enough for me to have a transplant.
I find it very interesting that acetaminophen can cause liver problems yet after transplant it is the only OTC pain reliever allowed, of course in limited dosage. Even some other doctors I have been to have been quite surprised at that.
I hope the fluid will gradually go away as mine did.

@tjgisewhite Hopefully being off of prednisone will help your weight to go down. I was on a high dose of it once for some condition and gained a substantial amount of weight in the two week course of it. I envy you getting off of it, I am still on 5mg a day. I believe this is because my blood numbers are not quite within range and it helps with that. My platelets are always lower than desired by a little. I wish I could blame prednisone for the weight I have gained recently but I think it's my fault, not the prednisone. I do blame being on prednisone for over three years now for my osteoporosis.
I still take biotin, recommended by my transplant team, for my hair. It's also good for fingernails and mine are thin and peeling so I hope it helps with that. The only thing to be conscious of with biotin is that if you have thyroid tests (TSH) it can alter the test results (per my endocrinologist), so if you are going to have that test you should stop taking it a few beforehand.
JK