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Transplants | Last Active: May 16 1:00pm | Replies (441)

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@jeanne5009

@jk volunteer mentor

Found it on bloodwork at my Medicare 65 check up. Further tests and a biopsy confirmed Stage 4 Cirrhosis. I have a lot of connections to causes but now they say it was likely due to NAFLD and progressed to cirrhosis. Im a carrier for hemochromatosis and recent tests indicate auto immune hep. I am very gradually deteriorating. I have mild HE and varicies. No ascites thank God. Going on 4 years now and have tons of symptoms but nothing like what I hear about. Mayo evaluated me and said I was too early so they watch me. I go for tests and blood every 6 mo. and my local Drs. send them reports. Not sure why the Meld score is so low but Im not nearly as sick as most of you. Im very pro active and enjoy learning all about the amazing human body! Very lucky too!

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Replies to "@jk volunteer mentor Found it on bloodwork at my Medicare 65 check up. Further tests and..."

@jeanne5009, I am happy to see your response, because I had been wondering about how you are doing. I remember reading and sharing with you while you were struggling with so many bothersome symptoms like itching, nausea, fatigue. Have these things eased for you?

@jeanne5009 Thanks for your response. I was curious because the first symptom I had that really alerted my doctor that something was wrong was HE episodes. Prior to that I did have symptoms -- low platelets, shaky hands, and more -- but they didn't cause much concern. I presume the blood work tests that were troublesome were ALT and AST. Oddly, mine were never very high! My cirrhosis was also from NAFLD which of course progressed to NASH. I never had ascites until the very end before I had my transplant, but I did have edema. I never really had ascites either.
As you go through this journey please feel free to ask questions to any of us who have been there. It sounds as if your cause and mine were similar but once it becomes cirrhosis I think the differences disappear. I hope your HE stays mild. Mine was more serious but not nearly as serious as some people have it, and there are of course some people who never have it at all. It's a pretty scary thing to be so confused.
Through it I too learned a lot, I never really knew just how important the liver is. I sure know now.
JK