Jay Bernheisel is a liver transplant recipient and one of ten runners on the Chris Klug Foundation’s 2019 TCS New York City Marathon team. He will also be accompanying and speaking on behalf of CKF as they travel to Mount Sinai Hospital and the New Jersey Sharing Network headquarters during their upcoming trip to NYC.
I was diagnosed with primary sclerosing cholangitis (PSC) in the summer of 2001. PSC is a progressive disease of unknown cause in which the immune system attacks the bile ducts, leading to inflammation and scarring of the liver. This scarring causes bile to become backed up in the liver which then leads to jaundice, cirrhosis, and eventually, liver failure. There isn’t a known cure for PSC and it’s hard to predict the speed at which these symptoms will progress.
Like many who receive this diagnosis, I wasn’t experiencing any symptoms at the time and I was shocked to learn the state that my liver was in. I’d recently separated from active duty service in the United States Air Force in order to pursue graduate school and, eventually, a teaching career. It was only when I was turned down for life insurance because of the results of a blood test that I knew something must be wrong.
As it turns out, Chris Klug had a similar experience with his PSC diagnosis and I remember reading an article about his recovery after his liver transplant that gave me a lot of hope looking ahead. I vowed to take care of my body as best I could to make sure it could handle receiving a transplant. I promised myself that, when I received a new liver, I would work hard in recovery to heal and live my life to the fullest post-transplant.
Thankfully, I was symptom-free for a long time. Three years after my diagnosis, I trained and ran for a marathon to benefit and raise money for a liver charity. One year after that, my wife and I welcomed our son to the world. Then, in 2006, I finished my Ph.D. and started my career as a teacher. The following year, our daughter was born. My doctors followed my condition closely during all this time, but thankfully, it wasn’t yet affecting my quality of life.
It wasn’t until 2009 that I began to see the effects of PSC on my body. I became jaundiced and being visibly ill began to change the way people acted towards me. It was hard for a lot of my friends and family to hide their concern. It became a constant reminder that I had a problem that was going to get a lot worse before it got better.
I began struggling with the choice I’d eventually have to make when my condition deteriorated to the point when I would need a liver transplant. I had already enjoyed a lot of success in my life since my diagnosis and I had tried to live intentionally to make lasting memories and enjoy experiences with those closest to me. I had a hard time with the concept of accepting a transplant because it felt like I was depriving someone else of their chance at a new life. I would wonder aloud to my faculty colleagues about certain hypotheticals wherein I was taking a liver from someone who was potentially more deserving or who needed it more than I did, like a recently sober alcoholic who just needed one chance to turn their life around. It took me a while to wrap my head around it, but I finally decided that I would undergo the transplant surgery when it became absolutely necessary.
That time came about three years later. I was evaluated for transplant in February of 2012. During that time, I had a couple of group appointments with a gentleman named Steve who was, in fact, a six-month sober alcoholic. Steve had recently married and his new insurance allowed him to receive a much-needed liver transplant. I didn’t know it at the time, but Steve and I would see each other again very soon.
I was on the transplant waitlist for four weeks. I live about two hours from the hospital and I happened to be staying closer to the hospital one night for an appointment with my hepatologist when I ended up receiving the call that night at 1 AM. I headed over to the hospital as soon as I could to receive my new liver. As it turns out, they also had called Steve as a backup to receive the available liver in case my transplant surgery didn’t go as planned.
The surgery was a success and, despite having a few minor struggles early on, I would go on to have an unremarkable recovery. The feelings of joy and relief are indescribable. Steve ended up being admitted a few days later for his own lifesaving liver transplant and we were able to visit and encourage each other while we were both recovering in the hospital. When Steve was being discharged post-transplant, he told me that he was so excited to go to his Alcoholics Anonymous meeting later that night and have the ability to share his story with others. My encounters with Steve have given me much comfort in my decision to accept this lifesaving gift of a new liver and has encouraged me to honor this gift as best I can.
Seven months after my transplant, I completed another marathon and fundraised for a liver charity once more. I wasn’t very fast, but I didn’t care—I was just thrilled to be there and have the chance to do it again. Last summer, I competed in the Transplant Games of America for the first time and I had the wonderful opportunity to meet other transplant recipients, donor families, and living donors from all over the country. With these new-found friends, we celebrated all the things that our healed bodies could do. I’ve also been able to encourage and support a few close friends as they’ve gone through the transplant and recovery process themselves. I hope to continue encouraging others by sharing my story and I can’t wait to do so as part of the Chris Klug Foundation’s 2019 NYC Marathon charity team!
Help Jay reach his fundraising goal before the NYC Marathon on Sunday, November 3rd! Donate here to help him raise money and awareness for organ, eye, and tissue donation.
Written by Jay Bernheisel, liver transplant recipient & 2019 TCS NYC Marathon team member with the Chris Klug Foundation. Edited by CC Cunningham, CKF Program Manager.