Connection to donation/transplantation
Liver Recipient 2015; Mayo Clinic
In 2008 I was diagnosed with a rare liver disease called Primary Sclerosing Cholangitis (PSC), which affects the bile ducts in the liver. I lived with PSC for several years of progression. There are no real treatments and no cure for PSC. I always knew there was an opportunity for transplant. In February of 2015 I was experiencing symptoms from the PSC, but was still not in the conversation for getting listed for transplant. However, I experienced sudden liver failure due to a second rare liver disease called Budd-Chiari Syndrome. This disease clotted the veins in my liver causing loss of blood flow to many organs. After entering the hospital on Monday February 23rd, I deteriorated rapidly over the next 3 days. Amazingly, after being flown to Mayo Clinic, where I had been seen for the PSC, I was listed for transplant at the top of the list and the next day a liver became available. At 32 and with a past history of being an elite athlete, I was able to sustain the deterioration to receive my transplant on February 28th of 2015, annually recognized as Rare Disease Day. I woke up 5 days later to learn I had fallen ill and received a liver transplant, much to my obvious shock.
Competitions/Events at the 2022 Transplant Games of America
20Km Cycle, Volleyball, 5Km run, Doubles Cornhole, Doubles Co-ed Pickleball, Doubles Pickleball
How many Transplant Games have you attended?
I attended the Salt Lake City Games in 2018.
Why do you participate in the Transplant Games?
The Transplant Games of America for me is about moving, feeling alive, and connection. In 2018, the 20 km bike and the 5k run were the furthest I had moved in 3 years. It was all about just being alive and doing the activity. I set a goal to keep jogging, no matter the pace, the whole way. The Transplant Games are all about meeting people where they are at and encouraging a healthy lifestyle and generating community. It has been wonderful to meet other transplant recipients in our region of Minnesota, North Dakota, and South Dakota.
The other piece is honoring the gift of organ donation. It was very powerful to stand in spaces and compete with others who live the joy of having another day of life. The events to honor donors are powerful. It is the biggest gathering of transplant recipients and I know I will leave the event feeling hopeful just as I did in 2018. These last two years have been hard for the transplant community due to the need to isolate with the risk of Covid-19. I imagine that many, just like me at times, were isolated pre-transplant and post-transplant due to treatments, being sick, or recovery. For me, Covid-19 felt like a return to the parts that I disliked the most about disease, loneliness and isolation. I am very happy to be back in community to celebrate the incredible gift I was given and to have some fun being active!
One thing you want others to know about donation
Every day is filled with moments that I would not have been able to experience without my liver transplant, especially those with family and friends. One person can truly make a life-changing difference for others.