Hi again Claire and other PSC peers, I so appreciate all of you.
Claire like boris said do NOT get hung up on numbers. Relax and enjoy your new life and new health. Surely you must feel some measure of improvement from where you were before. Find that and keep ahold of it. Your numbers will fluctuate and medication changes will happen to many transplantees. TRUST your team, leave it in their hands. Be smart and mention things but let them worry about numbers, possible rejections etc.
2 years after transplant I started having rejections. At the time my alk phos would run up to between 200 and 300, and bili between 2 and 3. The transplant team jumps on it because you are recently transplanted. And they'll pay attention if you are 7 years out and start showing. That is why regular blood work is good to have. A 72 yo friend who has never had problems with her transplant of 12 years was allowed to blood work every 3 months after 10 years. The Univ of colo is pretty particular and follow their patients for life, I've heard some centers do not. I think it is just good health care to have regular checks, flu shots, precautions when traveling, etc. I digress.
Ok so 2 years after transplant I had 8 rejections in one year. The team did sooooo many immunosupp adjustments which was starting to anger me. Finally they hospitalized me and knocked out immune system with similar drugs they use immediate post tx. Two week hospitalization. Have never worked since but I attribute much of that to adrenal insufficiency - which steroids affect and I've just had a heavy year of steroids. Then finally after the start of more ercp's and biopsies was told psc had returned. It was a bumpy transition. There is a fine line between the diagnosis which can only be measured with biopsy.
I was pretty angry and bitter. I felt transplant team had let me down. The head hepatologist met w/ me. I wanted to know stats and whether I'd be able to transplant again. Told that U of Colo's rate of return in transplanted PSC patients was 25% and they believed number would go up the longer people had transplant. was told that PSC may not respond at all like first time. It could be faster or slower. Mine has been faster. As liver gets worse since rediag in 2008 have had many more challenges than first time - age? health? adrenal's? pancreatitis, rejections, abdominal hernia, another round of cancer, etc.
STats I've looked at online (scholarly articles) are positive for 2nd transplant for PSC patients - no return. Not as good for those who have had cholangiocarcinoma - which I have had 2x.
Now as far as numbers Claire - I've been recently hospitalized w/ 7 bilirubin, 700 alk phos. So as you can see enormous range of numbers. For newbies you definitely would not want to see this. For me 5 years into 2 medical issues - being immunosuppressed and having PSC make things more complicated.
Look forward Claire - don't look for the problems. You will come along and all of a sudden one day you will say "I feel normal again" Truly!
Sorry so lengthy. Cheers to all! Deb