Derek’s Story

Site created on July 29, 2018

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.

Newest Update

Journal entry by Sarah H

We’ve hit a milestone: Derek has remained out of the hospital for over a month. He’s slowly but steadily gaining back the strength that he lost during his long battle with PSC and end stage liver disease as well as his 2 month hospital stay. We are thankful!

In his first six weeks since his initial January discharge, he was re-hospitalized three times. His course and recovery continue to be complicated.

His first outpatient imaging in late January showed a new, urgent finding of a hepatic pseudoaneurysm, or an out-pouching of vasculature in the liver that could be fatal if it ruptured. A hepatic pseudoaneursym is a rare complication of liver trauma, or in Derek’s case, the failed attempt to place a second PTHC drain in his liver in early January. He was urgently readmitted to the hospital and Interventional Radiology quickly performed a procedure to embolize the surrounding blood vessels. Thankfully he didn’t have any complications and was discharged within a few days.

However, about a week and a half later, he developed increasing left sided abdominal pain — which is odd given the liver and drain are on the right side of the abdomen. Strangely, the liver team did not find reason for the pain, and he was discharged home within a few days once again.

Yet his pain mounted and became severe, and he spiked a fever suddenly about a week and a half later. He went back to the hospital, and this time it was apparent on imaging that he had suffered a spontaneous retroperitoneal hematoma. He is still anticoagulated due to the many blood clots he developed during his initial hospitalization, putting him at higher risk of bleeding, and he had spontaneously developed bleeding in his left flank area. The hematoma was bilobed and sizable — likely caused by two attempts to drain fluid collections from his abdomen post-transplant when the hepatology team was trying to locate the infection source before they discovered the biliary leak and biloma eroding into his vena cava. The hematoma was very painful for many weeks but it has finally been easing up.

Needless to say, Derek’s still dealing with numerous nosocomial sequelae. All of this will still take time to gradually improve.  He continues to split his time between his mother’s home during my work week and our home on the weekends as he still needs a lot of rest. Functioning as a single working mother to an infant (now toddler!) over the past few months has been the most demanding role I’ve ever had. We are celebrating the small moments as a family of three and remain so grateful to Theresa (who is doing incredibly well and feels back to normal in many aspects already).

As always, thank you to those of you who have prayed for us and supported us along this winding path. Many of you continue to check in with us and help our family in tangible and meaningful ways. We continue to feel your encouragement and embrace from both near and far.

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