When diagnosed with NASH, I read everything I could about the fibrosis and cirrhosis. As good as the doctors are, they don't know everything about how these diseases affect each person. I have feelings of dread, loneliness, uncertainty as my doctors can't even agree as to what I have. One hepatologist thinks it is cirrhosis and the other thinks that it is a rare one called focal nodular regenerative hyperplasia. It doesn’t matter, they both have told me that there is nothing that they can do for me. So, here I sit wondering if and when it will get worse. I talk to some who actually are hoping that their liver gets bad enough so that they qualify for a transplant because sometimes it is easier to think about that than the uncertainty of being ill for who knows how many years. They say there is nothing they can do for me except monitor my symptoms every six months and treat the symptoms. It is a little disheartening to hear from the ALF that they don't have much information on your disease and that they recommend going to the NIH; which doesn't have much either. Sometimes I think of suicide.
NASH, no treatment, who knew? Now what?
Do you like this post?
Click for our online community