Written by CC Cunningham, CKF Program Manager.
2019 is well underway, which means another year of our nationwide Patient Ambassador Tour! Last Wednesday, we kicked off the 2019 Tour, presented by Astellas Pharma, right here in our home state of Colorado, where we visited two hospitals in the Denver area. To honor National Pediatric Transplant Week, our first stop was at Children’s Hospital Colorado, where Chris stopped in to talk with kids currently undergoing dialysis treatment in the kidney care unit. Many of the children there were on dialysis while they wait for kidney transplants and Chris shared his experience of being on the waitlist (for six years!) prior to his liver transplant. We saw a familiar face from when we visited Children’s last year: a 14-year old boy with kidney failure who has been on the transplant list for a while. He was on dialysis when we first met him less than a year ago, but what really stuck out to us then was his optimism, his gigantic smile, and his wonderfully positive attitude. He still possessed those same qualities when we spoke with him again during this year’s visit.
After catching up with our friends in the dialysis center, we got to meet a 17-year old boy who had recently received his second liver transplant. He had gotten his first transplant when he was just a baby and was doing well until recently when he went through chronic rejection and needed a new liver. After receiving his second transplant, he was out of the hospital for only a week before he began experiencing some major complications from the surgery and medications. He was at Children’s recovering from these complications and met with Chris to swap stories and chat about the bumps in the road that can come with organ transplants.
We then moved up a floor to the Pediatric Heart Center, where Chris met and spoke to a young boy who was born with congenital heart disease and is currently waiting for a heart transplant. His parents were there with him and asked Chris questions about the transplant process and his own personal journey. It was so special to Chris and all of us to meet these kids, hear their powerful stories, and witness their boundless energy and bravery during not-so-easy times.
After visiting with these patients, Chris spoke to a support group for parents of pediatric transplant patients—children who have either received a transplant or are currently waiting for one. Many nurses and transplant coordinators attended the meeting as well. Chris shared his story—from his diagnosis, to his time spent on the waitlist, to his transplant, to his Olympic-medal-winning run. Many of the parents shared their stories as well. One mother recounted her 10-year-old son’s recent liver transplant surgery and how, when he came to after the anesthesia wore off, he remarked, “It’s like the curtains opened and the colors are brighter!” Now, three months post-transplant, he is doing better than ever. It’s stories like that and Chris’ that help to inspire us all. Providing hope that transplant does make life better—and brighter.
We didn’t have to travel far for the second stop on our tour—right next door, in fact. We partnered with the American Liver Foundation and Donor Alliance to host a panel discussion on organ donation at UCHealth. Chris moderated the panel of four speakers who had all been touched by organ donation in some way.
Our first panelist (and only transplant recipient on the panel), Tony Hammes, received a double lung transplant after being diagnosed with idiopathic pulmonary fibrosis (IPF), a progressive lung disease in which scarring takes place and gets worse over time. Tony was able to return to work full-time as the Vice President of Supply Chain for a steel service center. On the panel, Tony talked about his transplant journey and emphasized the importance of his support system through the transplant process. “The real heroes are the caregivers,” he said while recognizing his wife (and primary caregiver) who was there in the audience. Most recently, Tony ran the 2018 BolderBoulder, a 10K race in Boulder, CO. CBS Denver picked up Tony’s story and interviewed him and his wife after the panel discussion was over. You can read this interview and Tony’s story here.
The second member of our panel was Melody Connett, a donor mother whose daughter, Jill, was involved in a car accident and passed away at 24 years old. Prior to the accident, Jill had discussed her decision to be a registered organ donor with her mother, so Melody knew that Jill wanted to donate at the time of her death. Jill was able to give the gift of life through liver donation to another woman. Melody and Jill’s liver recipient still keep in touch to this day! Melody now shares her daughter’s story and speaks on behalf of organ, eye, and tissue donation as a volunteer with Donor Alliance’s Advocates for Life program. “Too many times, we have an excuse to not do the right thing,” Melody said, discussing why one of her biggest focuses of organ donation advocacy is making sure close family members know of a person’s decision to register as an organ donor. Ultimately, she explained, it’s your family members who make the call on whether to donate your organs or not.
Jackie Zampella, our third panelist, first heard about altruistic organ donation in 2004, when she met Harold Mintz, one of the first altruistic kidney donors in the country and a friend of our foundation. After their conversation, she knew right away that altruistically donating one of her kidneys to someone in need was something she was going to do one day.
Fast forward four years and Jackie found herself surrounded by family members following the passing of her aunt. Experiencing firsthand the devastation that such a sudden loss caused for her and her family, she was inspired to make a difference for someone else and their family so that they wouldn’t have to go through anything similar. After altruistically donating a kidney at UCHealth in 2017, Jackie has been raising awareness for organ donation by speaking about her experience at local high schools and encouraging young people to register as organ donors. She says the best way to spread awareness of the importance of organ and tissue donation is, simply, to start a conversation. “The only reason I donated a kidney is that Harold said something to me about it,” she said. “That set off a chain of events that led to my donation. Never underestimate the power of talking about organ donation.”
Our fourth and final panel speaker was Dr. Elizabeth Pomfret, the Chief of Transplant Surgery for UCHealth, and is a highly regarded leader in multi-organ transplantation and a world leader in living donation transplant. As a (extremely impressive!) graduate of Harvard Medical School, Tufts University School of Medicine, and Boston University School of Medicine, Dr. Pomfret came to UCHealth’s Transplant Center from the Lahey Clinic in Burlington, MA. While there, she established the largest living donor program in the world, which had some of the most successful outcomes in the country. Dr. Pomfret is also the chair of the Department of Transplantation and Hepatobiliary Diseases and Professor of Surgery for Tufts University School of Medicine. During the panel discussion, Dr. Pomfret spoke about the medical side of organ transplant and provided a more technical perspective of the transplant process. She also talked about living donation and answered the audience’s questions.
It was extraordinary to hear such diverse perspectives from each panelist, centering around a shared experience of organ donation. Representatives from Donor Alliance and the American Liver Foundation joined us in hosting informational tables outside UCHealth’s Bruce Schroffel Auditorium, where the panel was held, to talk with attendees about organ donation and promote their separate missions. It was such a treat to have the support of our partners. Thank you to our sponsor, Astellas, our amazing panelists, and everyone who attended the panel discussion who helped make the event such an incredible success! Here’s to the rest of the 2019 Patient Ambassador Tour!