I will try to answer some of your questions in the order you presented them. I think I can honestly say that I understand all of the concerns that you are dealing with.
For @ 8 yrs. I was symptom free (except elevated liver function) Then my GI was concerned when numbers climbed steadily for about 6 months. About this time I began experiencing itch and nausea. Sept.0 8 he referred me to trxp clinic. I was jaundiced, now. My MELD was 15 at that point. I was placed on list in Nov 08. At Christmas I was real sick with the symptoms of end stage liver disease. My Creatine and bilirubin were jumping all over the place and that affected MELD (24). In Jan 09, I was extremely ill (for lack of a better word) At this point . My liver deterioration seemed to make a drop, then level off, then fall some more, level off, etc. ..so it was in a series of downward steps. My MELD score changed as they took steps to ease some of the inflamation or whatever was going on at the time.
How long was I on the list. (Nov. 08-mid Jan 09 )..I actually had to be inactivated when cancer was suspected. My trxp team referred me to Mayo. Then, I was listed at Mayo in mid March 09 for combined liver/kidney. I recieved my organs on Apr. 22, 09. My MELD was 34. The docs were never able to give me an estimated wait time, because they just do not know. But they were always positive when they assured me that it would happen for me. And that is where I drew my strength.
I do not know if there is a way to know how fast or slow the liver deteriorates…but the one thing that they kept telling me is to do all I could to stay as healthy as I could. To eat healthy, and to get some activity…that would help in the recovery.
You are in good hands at Mayo!…They know what they are doing, and if they don’t know -they investigate until they find out.
Let me know if I can be of any further assistance. Take care of yourself.