CC Cunningham is the Program Coordinator for the Chris Klug Foundation.
Earlier this month, the Chris Klug Foundation hit the road to attend the 2018 Transplant Games of America, a biannual, Olympics-style sporting event for individuals whose lives have been touched in some way by organ donation. Organized and sponsored by OneLegacy, the largest organ procurement organization (OPO) in the United States, the Transplant Games of America bring together transplant recipients, deceased donors, living donors, donor families and caregivers as a celebration of life and legacy impacted by organ donation. CKF road-tripped seven hours across state lines—to Salt Lake City, UT—to witness more than 40 teams compete in events ranging from basketball and swimming to cornhole and pickleball.
This year was a record-breaking year for the Transplant Games—literally. As a way to commemorate the 25th anniversary of the Games, 540 transplant recipients gathered at the event to break the official Guinness World Record for the largest gathering of organ transplant recipients.
It was my first year attending the Transplant Games. I had the chance to witness the spirit and energy that these Games convey. I met people from so many different backgrounds. Every person I met told me incredible stories about how organ donation has affected their lives in one way or another. Transplant recipients were enthusiastic to recount how receiving an organ gave them a second chance at life. Living donors were excited to describe their experiences going through the testing process and what their act of donation means to them. And donor families—the families of deceased donors—were deeply proud to tell of the selfless acts of their family members and the lives they were able to save, even after death. It was a harrowing experience—one that I am sure I will never forget.
CKF had the opportunity to sit down and talk with many of these individuals as they shared these stories of strength, loss and perseverance. These stories will be published periodically over the coming months.
The Transplant Games weren’t the only stop on CKF’s Salt Lake City visit. We also visited the Huntsman Cancer Institute at the University of Utah Hospital to host one of our Patient Ambassador Panels. As part of CKF’s Patient Ambassador Panel Tour, this panel was moderated by CKF’s founder, Chris Klug, and featured four panelists from the organ transplant community.
Kylie Sharp, liver transplant recipient and panelist, battled an autoimmune disease and primary sclerosing cholangitis, also known as PSC—the same disease Chris was diagnosed with prior to receiving his liver transplant—before receiving a liver transplant of her own.
Our second panelist, Dr. Terry Box, MD, is an Associate Professor in the Department of Internal Medicine at the University of Utah. As Kylie Sharp’s transplant surgeon, Dr. Box specializes in diagnosing and treating diseases of the liver. He is also the first person in the world to a receive a liver transplant as a transplant hepatologist!
Also on the panel was Gavin Maitland, a swimmer and double-lung transplant recipient. He received his new lungs after being diagnosed with a rare type of pulmonary cystic fibrosis. Gavin has written a book about his transplant journey, titled Swimming Through Adversity: Surviving a Lung Transplant.
Our fourth panelist, Anthony Torres, is a living liver donor. He reflected on his experience pre- and post-donation after he altruistically donated a piece of his liver to his father. Much to our surprise, Anthony’s father was sitting in the audience, and he spoke to us briefly about what it meant to him to receive 20% of his son’s liver.
We are traveling to sunny San Diego on the next leg of our Patient Ambassador Tour at the end of September! On September 19th, CKF will be attending a heart transplant support group at the University of California San Diego (UCSD) Hospital. We will also be joining a support group for those touched by liver transplant on the following day. We’re looking forward to answering some great questions and being a helpful resource for the transplant and organ donation process!