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Primary Sclerosing Cholangitis (PSC)

Transplants | Last Active: Jun 10 6:35am | Replies (93)

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@silverwoman

Hi, Sandy!
I was diagnosed with PBC (primary biliary cirrhosis) in 1992 at the age of 48, solely on the basis of elevated liver enzymes. A liver biopsy was done to confirm the diagnosis and stage the disease and returned positive for cirrhosis. At the time I lived near Chicago, so had good medical care available and the GI guy started me on methotrexate which had been one of the Mayo protocols for treatment and I understand has since been discredited as a treatment for PBC. Nonetheless, due to the drug or by coincidence, the enzymes began to fall and slowly, very slowly, returned toward normal. It turned out I had a heavy autoimmune component to my disease and it progressed very slowly, allowing my liver to accommodate and I had 25 years of extraordinarily good health while being followed for PBC. Eventually in 2017, a couple lesions showed up on a routine MRI which turned out to be hepatocellular carcinoma. That's when I first reached out to Mayo and it was the best decision of my life. First they took care of the cancer and then did a liver transplant in November of 2018. I could not have wished for better or more compassionate care.

I am doing well and hoping for many more good years. I hope this offers you some hope for your daughter. I'm now 74 years old and have led an active and full life; thanks to the Miracle of Mayo it has been extended. My best wishes for you and your daughter.
Sharon

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Replies to "Hi, Sandy! I was diagnosed with PBC (primary biliary cirrhosis) in 1992 at the age of..."

@silverwoman, Welcome to Mayo Connect. Congratulations on your perseverance and your commitment to take care of yourself. You have been on quite an amazing journey. I am happy to hear that you are doing well. I will be celebrating 10 years in April, so I invite you to come along and enjoy the post transplant life for many years! I was once told by 3 gentlemen, all transplant recipients who called themselves the Three Amigos, that the 'secret' to long survival is to take your meds and take care of yourself. I think that is good advice for us, don't you? Together these guys had 50+ post transplant years.

Here is something that I always enjoy sharing with new transplantees: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
If you have not yet discovered the Transplant Pages - https://connect.mayoclinic.org/pages/
I suggest that you check out the regularly updates Newsfeed posts presented by the transplant staff members. You might even recognize some of them!

How has the adjustment to post transplant life gone for you?
What is the best part of being post transplant for you?