Summary of my struggle with PSC

Hey Everyone!

I am currently new to this support group and I recently learned about this support website. I don't have any support groups that I know of in my area that I can attend pertaining to PSC, so this is the next best thing. I joined this website mostly to get information and support from others who have this same disease as I do. At times I feel so alone because it is an uncommon disease that many people have no idea about, and it just isn't the same when talking to family members or friends about it. For me, this disease has been a rollercoasting battle with it's high's and lows. I try to stay positive but it's hard when I feel that my life is on hold at the moment. I am only 27 years old and I have been dealing with PSC for many years. I was first diagnosed in Aug. 2003 with Autoimmune Hepatitis and was treated for it for six years up until Nov. 2009. In Nov. 2009, I became very ill and after a referral to see a different heptologist, a liver biopsy was done and I was properly diagnosed with PSC. I was told by my heptologist that my only cure/treatment for PSC was eventually liver transplantation. I am now currently on two liver transplant waiting lists at two different hospitals. Being on two transplant lists will hopefully better my chances for receiving a liver. I must be unlucky because not only do I have PSC but I also have Ulcerative Cholitis as well. Studies show that a good percentage of people who have PSC also have Ulcerative Cholitis. Currently, I probably have experienced every side effect of PSC that there is; such as the ascites, jaundice, weakness and fatigue, lothargicism, and itching. I have been hospitalized 6 times in the past year due to liver infections. I have had multiple ERCP's and two EDG's. I am only working part time due to my complications and now I am just waiting for "the call" for a new liver. Basically, I just want to meet some people on here who are going through the same complications as I am and maybe can give me some advice or insight on what to expect as the PSC progresses with the liver failure. I want to know how much more I have to endure untill I am able to receive a new liver. Also, I would like to talk someone who has had a successful liver transplant who can spread some hope and insight on the surgery and recovery from it. Please feel free to message me or email me. I might be able to spread some insight to others as well!

Excellent post Marie! Way to share your story. Love our offer to help provide insight to others!

I'm not a transplantee. But I do wish you the best. You are definitely headed for a journey. Educate yourself and understand what it means. You body is going to do everything it can to reject that liver. Getting yourself in good shape now is not necessarily going to help you because you need to be down for your immune system to leave that liver alone. Follow everything your doctors tell you. Even taking vitamins can be wrong.

Bless you! Mona