Scott Hull, a NASA engineer from Columbia, Md., who analyzes orbital debris and helps design satellite missions, marvels at all he has learned throughout his struggle to beat a rare liver disease, primary sclerosing cholangitis or PSC. He was diagnosed with PSC in 2002 is working to beat this disease with a new liver he received at the Methodist University Hospital Transplant Institute in the spring of 2008. Doctors do not know what causes PSC. What they do know is that PSC is a hardening of the liver due to the narrowing of the bile ducts. Symptoms gradually worsen; however they can be managed for years before in many cases a patient’s liver finally fails. The only possible cure is a liver transplant.

“Scott was very sick when he came to us,” said James Eason, M.D., medical director for the Methodist University Hospital Transplant Institute. “We have an outstanding team of experts in our transplant unit who worked diligently to find Scott a liver and perform the life-saving surgery he needed.”

The liver he received at Methodist was his second liver. The first liver he received was from his cousin in 2006, and unfortunately with that liver transplant he experienced multiple infections, resulting in his need for another liver.

Along his journey to beat PSC, Scott says he has learned many things that perhaps he might have otherwise missed. “This disease gave me the opportunity to see the ‘big picture.’” said Hull. “So many times we get wrapped up with the small things in life, like what am I going to eat or my socks don’t match. Relationships are very, very important, and knowing that I could die helped me strengthen my relationship with my wife.”

Hull recalls the many challenges he’s been through, medical complication after medical complication, debilitating fatigue, and even becoming deaf from one of the antibiotics he took to help fight infection after his first liver transplant. Hull discovered when you’re facing death; you are stronger than you think.

“There are usually many alternatives to the way you’ve always done things, and you just need to be willing to try something new if the old way doesn’t work,” explained Hull. “After I became deaf, it was so reassuring to find that people are amazingly adaptive and are almost always willing to work with your challenges to help you.”

The Methodist University Hospital Transplant Institute was the first medical organization to respond positively to the challenge Hull presented. Hull’s Model for End-of-life Liver Disease or MELD score which is used for assessing the severity of chronic liver disease was extremely high.

“Scott’s case was extremely challenging,” said Dr. Eason. “We have a reputation of performing successful transplants in patients other facilities may not attempt.”

Hull and his wife found the care they received at the Methodist University Hospital Transplant Institute to be exceptional. “The nurses were terrific and the entire medical staff was top-notch,” said Hull. “The suites make the facility very patient friendly. Since I am deaf, it was very important that Martha, my wife, could stay with me to help me communicate.”  

Hull is now back home in Maryland where he is enjoying being with his wife and two daughters, and working for NASA from home.