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ran73 (@ran73)

The decsion to be on a liver transplant list or not.

Transplants | Last Active: Nov 13, 2023 | Replies (19)

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@katebw

@hope25 my apologies- I didn’t realize you were asking me. By the time I understood I had liver disease my MELD was 32 and would only fluctuate down to 28 here and there. So my needing a liver transplant was a clear cut thing and I didn’t consider a living donor as there was no time to do so.

I have learned from others who have had a slower developing liver disease who are seeking a living donor as they are feeling very sick but in the eyes of the National Transplant List system they cannot be listed in the traditional way. I’ve heard that Mayo, University Hospital in San Antonio, U Pittsburgh and MGH Boston all have specialized living donor programs for liver transplant.

My transplant was through MassGeneral Hospital in Boston as I live in western MA. They are phenomenal. I didn’t scout around as I was so sick so suddenly but nevertheless I was lucky that they were my default transplant service.

Prior to my diagnosis, in retrospect for about 2 years I was not feeling well- tired all the time. I worked right up until a driving catastrophe led to my diagnosis but in retrospect I wasn’t as mentally sharp and lacked necessary energy to do my job well for those two years. Liver disease can affect one’s cognition I think in large part because there are higher levels of ammonia in one’s brain. It’s also fatiguing and muscle wasting so important to be as active as possible while ill- as hard as that is. Best of luck to you on your journey, I think this is a great way to find support.

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Replies to "@hope25 my apologies- I didn’t realize you were asking me. By the time I understood I..."

Thank you for your feedback. I have spoken to a transplant coordinator at UPMC. I live on the east coast and there is a drop in clinic about 1-1/2 hrs from here. She felt PENN was an acceptable place to be evaluated (already have gotten a 2nd opinion). I was told “nothing to do.” I am being told that I have “compensated” disease. I think that I have minimal hepatic encephalopathy and biopsy showing “vascular congestion.” Doesn’t this indicate decompensation? I am active but worry about the muscle wasting. Any suggestions are appreciated.