I’m new to here and I’m happy to have found a support group for PSC where others may relate, empathize and possibly encourage.
My first knowledge of psc came in 2011. It was so scary to hear that it was a possible diagnosis that I just dealt with it by not dealing at all–I was in total denial.
Fast forward to last month, jan 2014–I was hospitalized after massive pruritus and RUQ pain and an mrcp was done where they noted moderate intrahepatic dilation. Alk phos was in the 800’s, alt and ast slightly above normal, bili at 1.2. Was discharged home but told to follow up with a hepatologist and that an ercp with spyglass was the next goal. I had that done last week…
Findings: could not get in due to severe fibrosis of intrahepatic ducts. So what happens now? Dr doesn’t feel that I am transplant worthy yet and my liver enzymes fluctuate. Alk phos in 300’s now and alt and ast just slightly above norm. Bili at 1.7–symptoms have subsided some–nausea, fatigue and pain consume me most.
Anyone have any advice or experience where the ercp was unsuccessful due to severe fibrosis where the scope could not get into the ducts? What are the requirements for a transplant? Thanks in advance for your time and responses.
Sorry that it took so long to respond. I followed up with my hepatologist last week and she is putting me in a study that begins at the end of this month or beginning of next–Lumena study. I had a previous MRCP which showed some dilation in the intrahepatic duct and could not view the CBD which is what prompted the
ERCP. I had it done with spyglass which from my understanding are the smallest instruments made to try to gain access with such tight tubing, as one may say I have. The contrast filled on one side and not the other so I was told that the bile flow is only present on one side. I do not know my meld score but I do know that my dr believes I’m at stage 2 from the biopsies. I will be getting a fibroscan done soon and more labs repeated as well. I was thinking of maybe getting a second opinion in NY (but after the 3 month study) bc from what I was told, my ercp was performed by the best of the best here.
Thank you for getting back to me so quickly and hope all is going well with you.
Oh and I am feeling better. I’m pretty much always nauseous but I’ve gotten used to that. The pain has subsided and is more like a lingering soreness now. And I don’t itch nearly as much or as bad as before. Hoping the study helps.
I hope so, too, Jeanette! Keep us updated.