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

Transplants | Last Active: Jul 10 10:14am | Replies (21)

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@rosemarya

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?

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Replies to "Hi, @hope25. By way of introduction, I had my transplant 14 years ago. I had been..."

Hi Rosemary,
Thank you so very much for your detailed response. I have seen a local hepatologist with poor bedside manner and thus sought a 2nd opinion at PENN. I had extensive blood work and a low ceruloplasmin which was attributed to nutritional status. I was told that it is unlikely Wilson’s disease. My NASH fibrosure is high end normal and has increased in the last 6 months. I have not had a liver biopsy. All bloodwork, fibroscan and US are normal. The only positive finding was a biopsy of the antrum with pathology of “ venous congestion.” I was not told this was portal hypertensive gastropathy. I was told that I do not have portal hypertension or any sign of decompensation. The consultant mentioned getting an MRI to take a closer look. I am very concerned and feel that everything is minimized.

I eat extremely healthy and jog 4-5 miles daily. I began lifting weights in June as I feel my muscle mass has decreased. I have a BMI-19 so probably not a great reserve. I eat 6 small meals and around 75g protein daily.
Any recommendations that you can mention are greatly appreciated.