Hi to everyone on this thread,
I can certainly empathize with your frustration! It seems timing of transplant is a huge test of patience for sure.
I am posting a few questions here myself now that my husband and I have. We are just beginning to know how getting on the transplant list, etc, works. Our son is 12, diagnosed PSC and UC at age 8. The specialist then said he would need transplant in about 4-5 years. We have a new specialist now for about 1.5 years, who at first said the same, but changed this and now says no definite timeline for transplant. This is frustrating. We live in Canada. My son is on meds that our specialist thinks will help slow the damage. I can’t find any research to really support this. The meds are in combination to control both PSC and UC. He’s on remicade, azathioprine, urso, budesonide. He’s had pancreatitis twice already. He’s had colitis flare ups that definitely elevate liver numbers extremely, but hasn’t had that happen for over a year. Labs look good, liver enzymes slightly up, but all else good. But he gets really tired quickly. How do I know the condition of liver tissue matches the numbers?? No biopsy done for four years, only MRI and ultrasounds, which don’t seem to show much. Should we be questioning the doctors for specific details more? I don’t know if my son is on the list even yet. We met one of the transplant surgeons last year, who just said he is a low priority in the list. No score or anything like that was given. Our son is so young, and without the firmer timeline now, we don’t know whether to push the doctors or just go along with the med plan… the docs seem very convinced that the longer transplant can be delayed the better. It seems like risk assessment, which is worse, being on heavy meds consistently that might have serious side effects the longer you take them, or transplant, which apparently has its own set of really serious possibilities. Any thoughts would be appreciated! We are not really sure of anything at this point, other than we want to make sure we are 100% advocating for our son to take the best and safest course of treatment, and that we are happy that no flare ups requiring a hospital stay have occurred for a good amount of time.