Liver transplant - Let's support each other

@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

@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.

@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.

@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.

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.

@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 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.

@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.

Thank you so much for your reply! My transplant was unexpected. I've been cabin crew for a major airline for 31 yrs, and used Tylenol PM as my sleep aid. I think you know where this is going!! I got in from an Intl. trip on 1/16/20...didn't feel good. Went to urgent care on 1/20/20, I had the flu...I started vomiting on my way out...they sent me to ER where more test were ran...I was in acute liver failure as well...my MELD was 40 1A...on 1/23/20 I became the very fortunate recipient of a healthy liver. I'm very blessed! My transplant team is aware of the fluid, at this point we're just monitoring it. I was just curious if other patients had had this, so thank you for sharing your story with me! It's great to talk to fellow transplant patients! I'm so glad I found this page!!

Awesome! Thanks so much!!