Sophie H.

Primary Sclerosing Cholangitis and Autoimmune Hepatitis

At age three, I was diagnosed with Primary Sclerosing Cholangitis/Autoimmune Hepatitis overlap as well as Crohn’s disease.

I was at the hospital being treated for an intussusception when the doctors discovered my liver numbers were elevated, and I was told I would eventually need a liver transplant.

When I was 11, I was placed on the transplant list. Because my PELD score was low, we knew I would be waiting for a long time.

Since the beginning, my entire liver team has been incredible. There are a lot of moving parts that go into managing complex medical problems and my team has helped to manage all of them, from medications, tests, and symptoms to social aspects, emotional health, and difficult decisions.

My team and I started exploring living donation as an option after I had been on the list for about a year. Dozens of my family, friends, and even strangers were willing to donate, but none of them were the right match. There were also multiple times I was called in as the backup recipient when a liver became available in case the organ didn’t work for the intended recipient.

On December 30, 2017, after four and a half years on the list, I received the call that a liver was available.

I had my transplant just before midnight on New Year’s Eve. My surgeons were able to save two lives by performing a split-liver transplant; part of the liver went to me, and the other part went to an 21-month-old boy.

After my transplant, I spent two weeks in the hospital and had one additional surgery before coming home. It took a long time for me to start feeling better, and I had some complications within the first year, but now I am the healthiest I have ever been because of my donor and their family’s selfless decision.

My donor has given me the chance to plan for the future and accomplish goals I never dreamed of. Since my transplant, I have had the opportunity to travel to ten countries in Europe and Africa. I also recently graduated from high school and will be attending college this fall to study biology and am planning to go to medical school in the future.

I enjoy volunteering, advocating, and raising awareness for organ donation and liver disease and I am very grateful to be a part of this amazing community of patients, caregivers, medical professionals, and supporters.

It’s okay to not be okay all of the time.

Last updated on January 2nd, 2024 at 11:55 pm