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Liver transplant - Let's support each other

Transplants | Last Active: 3 days ago | Replies (1617)

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@xplantsister

Hello. My brother received a liver transplant a month ago (April 2020). I am one of his caretakers. There are so many things going on with his body (and mind) after the transplant. We are not sure what is "normal" and what is not normal under the circumstances and/or what will be lasting or is transient? We do not want to call the post-transplant coordinator every day and become a family that cries "wolf" for every new sensation or concern. We were hoping to e-talk with others who have gone through a liver transplant and/or their caretakers and get some experiential input. Is this a good place for such exchange or does anyone have any resources to recommend for such questions? Thank you.

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Replies to "Hello. My brother received a liver transplant a month ago (April 2020). I am one of..."

@xplantsister, I want to welcome you to Mayo Connect. We are patients, and we are here to share our experiences to support and help each other when you need someone who understands what it is like to live with a transplanted organ. We do not provide medical diagnosis.
Thank you for your concern and care for your brother during his recovery.
I am a liver and kidney recipient (2009) and I would like to say that many of us share similar experiences with each other, and other share different experiences. So normal can be a broad range of things. Will you share more about your brother's current situation. What kind of 'things' are going on with him that concerns you? What has your brother's doctor said about his current situation?

Hi @xplantsister Welcome to Connect. Your brother is so fortunate to have you watching out for him
I had a liver transplant in September 2016. From what I have learned, there are so many variations on how a person feels afterward that there is really nothing that is simply "normal". I was exceptionally lucky, when I went for my first post-transplant check-up I stunned the transplant team with how well I looked. I was in the hospital for six days and within two or three days after discharge, I felt great.
Others have many more problems and I hear of many who have a lot of discomfort around their incision. I did not have that at all.
You have come to a great place to hear about others but I think the best place to start is to say what symptoms you are wondering about so if people have experienced similar symptoms they can reassure you. Anything more than very minor should be run by the transplant team though. I still check with them on every medication that is prescribed for me by other doctors, and occasionally on other things. That's what they are there for. My transplant at Mass General in Boston has been incredible. I have a feeling that transplant teams in most hospitals are.

@autoimmunecirr Hi and welcome to Connect to you also. You have been a transplant candidate for a year and a half now, have they indicated you are getting close in your MELD numbers to the top of the candidate list? I was a candidate for a bit less than a year and a half. I was not on prednisone then, my cirrhosis was from NASH and I don't know if that makes a difference, but I have been on prednisone since my transplant since my blood numbers run a bit low. I suspect I will be on it forever. 😕 I do not like it either.
As I commented to @xplantsister, every person seems to be different and two months after transplant for @gphetteplace is very quick but I was pretty much back to everything by then also -- I am retired so I did not have to resume working. There are some people who take a year to get back to feeling great. As soon as they cleared me for pool aerobics I was back to that and also back to exercising in the gym.
You don't mention how you are really feeling but for me, I found that staying active and exercising pre-transplant was a huge help for post-transplant recuperation. I felt pretty well most through most of my waiting time, except for having HE episodes, and except for the last six weeks, and I believe that getting fitter and intentionally losing weight (I was pretty heavy) were a big part of my success. If you are well enough to maintain an exercise program I would highly recommend it.
JK

I had a Liver and Kidney Transplant in June 2019. After 6 weeks I still felt terrible and had the concerns regarding many things, Like literally feeling my Liver move around, leakage through the incisions, numerous medication adjustments, further testing at the Hospital with a few days re-admission, etc. However, as my weekly Blood Work showed - things were stabilizing. I never hesitated to send a Portal Message to my Coordinator, and always received a call or Portal Message back. I urge you to also always contact them and ask about your concerns. They work with similar patients Daily and can quickly ascertain your concerns. For me, the first 2 months were concerning, the following two months - were getting used to my new normal, and now I feel better than I have in years. I do have a lifetime drug regiment, as we all do.