Now what?

I have had PSC/Crohn’s for decades, only dx’d in 2015. Age 76 now. Developed ascites this year which has responded to diuretics. On infusion biologic for my Crohn’s. Told by transplant center I am past the age to be waitlisted for transplant. My Meld score is too low. No one w/operate even if there were a living donor. By the time my Meld score is high enough there would be too many comorbidities. My fatigue is profound. Exhausted all the time — nap in the afternoon and sleep late. I am careful w/diet. Now I have developed MHE and am on Xifaxan. What now?! Should I force myself to get up? Do I make myself walk 30 minutes a day? Does the MHE get worse? Should I go to Mayo Clinic for a total workup even though my hepatologist is with a first rate teaching hospital and I have been seen by the Director of Transplants?

Sorry you are having such a continual problem with your PSC/Chron’s, but I’m glad you are still ticking and making it. Yes, I certainly understand the exhaustion. Unfortunately as you well know it comes with PSC. I would encourage you to still make yourself walk or do some form of exercise 30 minutes 5 days a week as a goal. It does make a difference. If you have the opportunity to go to Mayo Clinic I would encourage you to do so. You may be surprised at what they might be able to do to improve your quality of life and to take a real close look at your options as far as transplant, etc. Good luck and please let us know how you are doing.

Merry Christmas,


Thanks, Mark. Merry Christmas to you as well.

So sorry you’re feeling so fatigued and confused. Definitely get a second opinion. Also, try to get ahold of this person who has lived through the process. She might have more insight.

Prayers to you and Merry Christmas!