Thank you, Athenalee. Yes, I certainly intend to cooperate when it comes to taking immunosuppression drugs after transplant. I do not question the importance of them just want to understand the ramifications of taking them better. It's good to hear from someone who has been through it all.

I do very much appreciate your input. Having the freedom to ask questions and get answers is a good thing. Otherwise, I spin around in my own head and that's not helpful :o) as I'm one of those with a need to know.

Twenty years ago, my local hepatologist did a liver biopsy on me. I was diagnosed with mild portal hypertension at that time but my condition wasn't explained adequately to me. Then I was sent to Mayo and I saw a wonderful doctor, there, who really cared and took the time to write up a list of what he thought should be done for me. Since I am AMA negative, one of the things he suggested was to put me on a trial of Urso, and if I responded to it, that would prove I had PBC. The local doctor I was seeing just happened to leave his practice at this time and I was placed with a new local doctor. She had to see the letter of recommendation in my file from the doctor at Mayo but she never bothered to do anything that was recommended. Ten years later, I was feeling congestion in my liver and asked her if I shouldn't be going to Mayo for another biopsy, and would she give me a referral to do so? Her response: "No" I reiterated, "You won't give me a referral?!!" Her response: "No. Even if I did, it wouldn't make a difference anyway."

I decided to go without her recommendation and, while the doctor who had written the letter of recommendation had since left Mayo, another Mayo doctor put me on Urso and all my liver labs returned to normal! For ten years my local hepatologist allowed my liver to burn!! I wondered where I would be if I had gotten on Urso earlier. I trusted my local doctor to do right by me and all she ever did was do labs which were always elevated and she would write a note to me, "Labs stable." So I assumed all was fine because she never explained anything to me and I never asked, just trusted. I know since going to Mayo, my liver lab results were not fine and remained high for ten years until I was put on Urso.

So, even though I have come to accept what happened, I did develop this need to know, probably more than your average person, I dunno :o) It probably will never leave me after being stung like I was. I know I can trust my Mayo doctors and the transplant team but I still have this need to know. It's a healthy need, I believe, even if I have a propensity to take it too far. Knowing more is better than knowing nothing, I figure. :o)

Thank you all for being a source of knowledge and encouragement.