Introduction and Question

Hello all.

I recently joined this group for both emotional support and to learn more about PSC. I was diagnosed with PSC at 15 and had previously been diagnosed with Ulcerative Colitis at 12. I am 21 now and had been mostly stable since diagnosis until the past year or so. I've recently been developing many more complications such as Portal Hypertension, verices, ascites, edema, cholangitis, and more bile duct blockage. My doctor has told me that, at this point, I'm basically just waiting to be sick enough to get a living donor transplant, because I would likely never receive a cadaver transplant due to where I live and my low MELD score.

I have one specific question that has been on my mind lately-- my doctor has told me that my liver function numbers are "stable". That is, they're not normal by any means but they're not actively getting worse. However, my symptoms have gotten dramatically worse over the past year, especially over the past few months. I can barely leave my house for more than an hour or two at a time a few times a week, I have near constant pain, I sleep a ridiculous amount, I swell dramatically, etc. I've had to quit school and move back home with my mother recently because I was unable to take care of myself. My questions is: Is this a common experience, for symptoms to continue to worsen so dramatically despite numbers staying relatively the same? I'm not sure my doctor quite understands how much worse I have been feeling because my tests do not show similar worsening.

Thank you!


Ellen, I do not know all the details, but I do know that the MELD score can be an inexact determinate of how sick a psc patient is. The MELD score has received a lot of criticism due to this variance, which is why our docs usually have to put in for a waiver to bump up the MELD score a few points to put us on par with other liver patients who are not psc'ers.

If something can not be medically documented to suit UNOS, our docs have a hard time getting our score bumped. Case in point-itching. It can drive us crazy, but has no effect on our meld score, and won't qualify us for a waiver of a few points.