@gering69341, You are absolutely correct that we learn as we go along. I was diagnosed with a rare liver disease, myself, (Primary Sclerosing Cholangitis, PSC). Early on, my doctors also told me that every one is different with the symptoms and responses to the medications and treatment. It can be frightening and lonely in addition to living with miserable symptoms. I am happy that you have shared some of your story. Would you care to join me in the Transplant Discussion Group? Here are somr discussions that I think will be of interest to you because you can read about, and meet others who are sharing about their pretransplant experiences.