My son who is 28 was also just diagnosed. After finally getting to a great hepatologist at a major transplant hospital (Virginia Mason in Seattle) we were reassured that much of what is online is somewhat outdated and very scary. The newest information is showing that most PSC patients have a good 20-25 years or even longer before needing a transplant now (websites are still saying 10 years!). Also, there are many treatments in study showing good promise - hey, they may even find a cure long before you’re ready for a transplant! Mark is right, live your life to the fullest - and that means also the healthiest you can. Take it easy on the exhausting days and give yourself a break when it becomes too much. The things we’ve found were essential and things that made us feel like we were ‘doing something’ were him getting into counseling to deal with the grief and frustration and learn some coping skills and to start making healthier choices for diet, exercise, etc. (but he still indulges in the occasional ‘break day’ or meal.) At Virginia Mason the GI department has specialists for everything… my son has a PSC doc, a UC doc and one that will deal with any bile duct issues - IE: ERCP’s to open strictures. His UC doc was super helpful about making sure we understood all the different levels of treatment available - including a new treatment showing good results and even remission in children and some young people (of UC, not PSC). I actually have 2 sons with UC and getting their inflammation levels to 0 is a major goal the docs have. I love that the next med up is being offered to us as a self-administered shot instead of an IV infusion as we were told would be the course elsewhere… the point is, get yourself a really good doctor who deals with PSC and UC on a REGULAR basis and you’ll have more options open to you (We travel 5 hours each way we value the expertise so much!) Also, check out this section about young people and PSC: For Young Adults (Teens and Early 20s)
Corina