Derek enjoying a hike in the Chuckanut Mountains

Derek Norton Derek: Battling PSC

First post: Jul 29, 2018 Latest post: Jan 23, 2023
In the summer of 2017, Derek was diagnosed with a rare autoimmune condition impacting his liver and his life: Primary Sclerosing Cholangitis (PSC). PSC causes the body to attack the bile ducts and build up fibrosis and strictures. Over time, this leads to liver disease and cirrhosis. There is no known cure and the only treatment is a liver transplant. 

Derek has cirrhosis and is in need of a liver transplant. In autumn of 2021 his health started to rapidly decline and he has had numerous hospitalizations and complications. In June of 2022 he was hospitalized for 2 weeks for a bile duct infection that led to a serious blood stream infection. His medical team has advised a liver transplant is urgently needed and are concerned that a bile duct stricture found during his last hospital stay could rapidly develop into cholangiocarcinoma. 

Liver transplant allocation is determined by a MELD (Model for End stage Liver Disease) score, with the higher the score, the more likely to receive a cadaver transplant. Unfortunately, PSC is an uncommon liver disease, so while PSC patients may become seriously ill, their MELD score often does not correlate with the severity of their illness. A traditional cadaver transplant is likely to come too late for many PSC patients, as PSC can further develop into cholangiocarcinoma, a rare but aggressive cancer in the bile ducts that has a 6 month life expectancy. The only other option for a liver transplant is a living donor liver transplant. 

The liver is an incredible organ: if you remove half of a living donor's liver and place it into a matched recipient, it can regenerate in both the donor and the recipient. This is a living donor liver transplant. It is a gift of life, and while living liver donation is a complex surgery and not without risk, it is the only option for Derek at present. 

Derek is listed for liver transplant at the Cleveland Clinic. Donors must be under 60, blood type A or O, and generally healthy. Derek's insurance will cover the cost of screening and the donation process. If you are interested in donation, call the Cleveland Clinic Liver Transplant Center: 216.444.1976. Please visit the Cleveland Clinic website below for more information: 

https://my.clevelandclinic.org/departments/transplant/programs/liver/living-donor-clinic

We know a living donor or traditional transplant is not a guarantee, and PSC may reoccur after transplant, but we remain hopeful. Derek's health journey has had many ups and downs, hospitalizations, tests, and there are sure to be many more updates to come. Thank you for visiting his CaringBridge website, where we will post on his condition and search for a living donor. Thank you for your support and encouragement.
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