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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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@hope25

No I am not on a wait list. I calculated my MELD at a “7.” I was told only a MELD of “15” is considered for a living donor. I was told that I have “compensated” disease despite “venous congestion” on gastric biopsy. This points to portal hypertensive gastropathy which is not being acknowledged as “decompensation.” I was told that I do not have portal hypertension, but the above suggests that I do. I wonder if I should be started on Carvedilol. Any thoughts?

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Replies to "No I am not on a wait list. I calculated my MELD at a “7.” I..."

Hi, @hope25. By way of introduction, I had my transplant 14 years ago. I had been diagnosed with a non-curable progressive liver disease for which there is no cure (except a transplant when the liver fails) For 10 years, I waited, wondered, worried, and was under the care of a wonderful gastroenterologist who consulted with a hepatologist in regional transplant center. So I can understand what you are experiencing.
As I read your message, I am wondering whether you are under the care of a specialist (gastroenterologist or hepatologist) who can guide you with potential treatment. My GI (gastroenterologist) assured me that he would send me to the transplant center for evaluation "when" it was time. After approximately 8 years, I was referred, evaluated, and listed. The waiting, wondering, worrying, and excellent care continued via transplant team.
During that time, I learned that every liver patient can experience different symptoms. I learned that changes can come suddenly, and some are treatable or manageable. Not every liver disease is going to result in need for transplant. The best advice that I experienced was to remain physically active, eat a healthy diet, avoid alcohol and over-the-counter medicines and supplements.

Have you connected with a GI who has some expertise with liver disease? Have you received a diagnosis for your liver issues?