This is my first post here so I guess I will just tell my story from the beginning. About a month ago I went to my PCP for a routine physical. Everything appeared normal. I had never had a blood test before so my doctor ordered one. When the results came in my liver enzymes were pretty high: ALP 727, AST 349, ALT 349, bilirubin and albumin were normal. I was referred to a local GI doc who ordered an MRCP which revealed mild biliary dilation. I also got a colonoscopy which showed I had IBD of an indeterminate type (probably UC) My GI suspected I had PSC and recommended I go to the Mayo Clinic for further evaluation.
Last Monday I drove to Mayo and spent a week there getting tests and meeting with doctors. My PSC was confirmed. They found a 2cm long stricture in my common bile duct which they dilated with an ERCP balloon. I guess some good news is that none of my strictures were particularly narrow and are still fairly mild. Because my transferase levels are so high they did a liver biopsy to find out if I have autoimmune hepatitis. I am still waiting for the results on that. I am going back to Mayo in six months for another MRCP to get an idea of how fast my PSC is progressing.
It is bizarre knowing I have such a serious disease when I have no symptoms of PSC or UC. Despite my lack of symptoms the hepatologist I saw said I probably have already had PSC for several years which was a huge shock. I am still trying to process all this mentally. I feel like now I am just waiting for the symptoms to start showing themselves. I am incredibly concerned about a premature death, either from getting cancer or dying on the transplant list. I wonder how long I will remain asymptomatic for. Thank you for taking time to read my experience (so far).