Amy C.

Primary Biliary Cholangitis

I was diagnosed with Primary Biliary Cholangitis (PBC) in April 2016. Previous to the diagnosis, I experienced horrible fatigue that continued for 7 years before we figured out the cause.

At first, an ultrasound showed mild fatty liver, so I lost 30 pounds. However, my liver enzymes continued to climb. I was finally diagnosed with PBC after my doctor insisted I see a Gastroenterologist.

I had seen many doctors and had no answers, which made me reluctant to see another one. I finally went and the Gastroenterologist found out I was positive for PBC. He then sent me to a Hepatologist who then diagnosed me with Stage 2 PBC via a liver biopsy.

We assumed I would progress slowly or not at all as most people do. Unfortunately for me, that wasn’t the case.

I didn’t respond to the medication used to treat PBC. I tried a new medication that was just out and I could not tolerate the side effects. The fatigue continued to get worse then the itching started. It was a nightmare. Before liver disease I had no idea how debilitating itching could be!

By 2018 I began to become jaundiced. It got to the point I needed a liver transplant. I had several family members test to be my living donor. However, on March 18, 2019 (3 years after my diagnosis), I received the call for a full liver match!

It’s been 16 months since my transplant and I have my life back. The fatigue is better, the itching is gone and my eyes are white! I work out 6 days a week, hike, enjoy my family and I love life again! Before I became ill I never thought twice about liver health. Now I wish everyone was aware of the role their liver takes in keeping them alive.

I have to admit that laughter kept me out of despair! Through the hard times I always tried to find a reason to smile.

I encourage everyone to register to be an organ donor! I’ve been an organ donor since I was 16 years old. It’s so important to end the wait for organs! We can all do our part.