“We are a family held together by an organ donor.”
It’s the message CDPHP member Karen Chico Hurst reiterates when telling the story of her family’s experience with a life-saving transplant. At just 12 years old, her son, Zachary, got out of bed one morning and simply said he didn’t feel good. That summer saw him go from a very active to a very sick child due to a rare and very serious condition called primary sclerosing cholangitis, or PSC. The disease slowly damages the bile ducts and renders the liver unable to digest fats and fatty vitamins. The family was told Zachary had 10 years – at most – before he’d need a life-saving liver transplant.
He made it six years.
At that point, Zachary, heading into his sophomore year at Stony Brook University, became very ill. “I just didn’t have a good feeling about him starting school that year. I knew something was coming,” Karen recalled. And she was right. Zachary came home, got off the train, and was completely yellow. After a nine-day stay in the hospital, doctors advised Karen to pull Zachary out of school and prepare themselves for the fact that as of January 2018, Zachary would need to go on the transplant waiting list.
Zachary was 18 at the time and listed as an adult. Karen knew the odds of his receiving a liver from the transplant list were not good, so they began investigating live donation. Due to an autoimmune disease, Karen was quickly ruled ineligible to donate. Her husband, Dave, was a match, but pre-testing revealed that once the doctors sectioned off the size of liver Zachary needed, Dave wouldn’t be left with enough to survive.
Karen was understandably frustrated, but through it all, she recalls, she had the support of the CDPHP Care Team. “I don’t even know what I would have done without them,” Karen said, “From prior authorizations (with nurse case manager Gail), to billing questions, to just calling to check in – they lifted me up during the most difficult time of my life.” The CDPHP Care Team came through once again when Karen’s brother turned out to be a match for Zachary. Though they prayed for the transplant list to come through, it didn’t, and Karen’s brother prepared for surgery.
Though it was difficult knowing one family member would need life-saving surgery, having two family members go under the knife at the same time was understandably stressful for Karen’s entire family. “Our nurse case managers (Bea and Wendy) called me weekly for six months. They educated me about the process, spent as much or as little time with me as I needed, so that I could feel prepared for what was up ahead, and they remained in touch post-transplant. They asked about my younger son, my parents, my brother’s wife, and the rest of our family, to ensure we were all getting the support we needed during this time. It was extraordinary.”
Karen recently recalled “One of my biggest concerns was the ever-growing stack of bills related to Zachary’s care. Was I going to lose my house? Will we need to borrow money? I tell people day in and day out how lucky we are to have the benefits we do. No parent should have to choose between paying the bill and keeping their kid alive.”
Zachary received his life-saving liver transplant in March of 2018. Recovery was difficult for both he and Karen’s brother, but today, they are both thriving. Zachary went on to graduate college, is gainfully employed, has a wonderful girlfriend, and is looking forward to living a normal life. Karen’s brother is also doing well post-surgery.
Employed in the exceptionally busy Registrar’s Office at the University of Albany, Karen’s time to ask questions about Zachary’s care was limited to when she got home in the evenings. “The fact that CDPHP member services staff were available until 8 p.m. was such a huge help. I spoke with the same individual, Adam, nearly every time I called, and he was so helpful and patient with me.”
“At the end of the day, every day, I say a prayer and thank God for my brother. He saved two people’s lives that day – Zachary’s, and someone else on the list who needed a liver.”
If you’re interested in registering to be an organ donor, visit Donate Life New York to learn more.