Sara,
Thank you for sharing your story. It’s unfortunate that there are physicians who just are not qualified to properly diagnose liver disease. I’m so glad you found a hepatologist that appears to be level headed and working with you through this. Stage 2 is not too bad and hopefully the PSC will move slowly. I know how the intensity of the itching can make you go almost crazy, been there done that. Each of us here on the forum have dealt with our itching in a variety of ways. What works for one might not work for another. For me, I tried everything over the counter I could find and some prescription based things and nothing worked. Finally my hepatologist prescribed Rifampin 300 mg twice a day and it eliminated my itching 98% most of the time. I’m not sure how it would interact with you being with child but you might ask your hepatologist about that as a possible relief. I would suggest the next time you need an ERCP that you make sure you are having it done in a hospital system that does liver transplants. Make sure they give you an physician that is trained in advanced endoscopy and does this type of procedure every day of the week. This procedure is not for the average GI doctor to be messing around with. As you have found out it’s a very invasive procedure and can trigger an infection or pancreatitis putting you in the hospital. I was fortunate with the 5 I had in a 4 year span to not get bad enough to need intervention through hospitalization. And, we are all different so again it can happen and does at times. We are here for you to help in any way we can. Make sure they are checking your labs on a regular basis and I would encourage you to track those labs in a spreadsheet or a method that works best for you to watch trends. Keep an eye on your MELD score. When your MELD gets up there around 12-15 I’d be asking them to refer you for transplant listing. PSC can change pretty quickly sometimes. Mine jumped form a 12 in 1/2015 to 19 in 4/2015. Then in late July, 2015 it jumped to 36. I was transplanted 2 days later. Hopefully yours will move very slow and you will not have to face transplant for a long time, but you need to keep track of things. Here’s a link for the MELD calculator. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Take care,
Mark
PSC 2011 / Liver Transplant 7-2015