Epilogue

J.D. would live only 8 years after attending the Youth Transplant Camp. Steve, or Stephen as his family calls him, lived 9 more years; Amberlee and Wes, each 12. I was deeply saddened as I learned that 13 of the 45 former campers whose poetry is featured in this book have since died. Amber W. Brittany. Dana. Dennis. Mariela. Nathan. Tara. Tyler. Vaioleta.

I was shocked, too, although I probably should not have been. According to statistics in 2004, soon after we began the poetry project, the first-year survival rate for pediatric kidney recipients was 95% in the University of Utah Solid Organ Transplant Program (Sample, 2004). The 10-year survival rate was 40–70%. In the intervening years, long-term survival rates have improved only slightly across the nation. Five-year survival for adult kidney transplant patients is 90%; liver transplant recipients, 77.7%; and heart transplants, 79.5% (U.S. Department of Health and Human Services, n.d.). In its most recent annual report, the Organ Procurement and Transplantation Network/Scientific Registry of Transplant Recipients does not list 10-year survival rates. Of the 45 former campers, 71% have survived: a statistic I should have expected. Numbers alone, however, are not sufficient to convey what it means to survive. I hope Voices of Teenage Transplant Survivors proves that. Not only do all of their voices live on through poetry but so also do their honesty and courage, humility and compassion embodied in their writing, unique now as it was then in the canon of illness narratives.

“Survive” is a contested term in the culture of medicine. When patients continue living beyond treatment, they are called “survivors,” which is accurate. Survive means to remain alive (Merriam-Webster, 1993a). Cancer patients who live a specified number of years beyond surgery, chemotherapy, and radiation therapy, for example, are called survivors. In recent years, however, the connotations associated with survivor are being queried. Americans have officially fought and battled the enemy in the “war on cancer” since 1971 when then President Richard Nixon signed the National Cancer Act (National Cancer Institute, n.d.). Patients who “win the war” are lauded as survivors. But what does this suggest about patients who die? Did they not fight hard enough? Did they “succumb” because they “surrendered” to the disease? Our culture has mistaken survive for one of its synonyms, outlive: “the power to endure as in a competition or overcoming difficulty” (Merriam-Webster, 1993b), a power predicated on an individual's decision. Patients cannot decide to outlive their prognoses.

Those who live through organ transplantation are indeed survivors, for they have endured surgeries, often long, complicated, and dramatic. Yet, as a heart transplant coordinator told me, she cautioned patients awaiting surgery. “It's the biggest thing that will ever happen to you,” she would tell them. “But it doesn't mean you'll live forever.” The teenage transplant survivors at YTK knew this. On a video I have of a 2003 feature story about the camp, the reporter from the Salt Lake City-NBC affiliate remarks in her lead-in: “Anthony Robbins says he has best friends at home in Rexburg, Idaho, but he just can't talk to them about his transplant.” Then she turns her microphone to the 12-year-old: “Last night, I stayed up until 1:30 talking with the guys about transplants and how long the doctors gave us and everything. It was really cool, and I never felt uncomfortable about it at all.” Anthony seemed relieved to share statistics most of us would find distressing, if not agonizing to confront, which points to a different definition of survive derived from its root in Latin: supervivere, super meaning “above” and vivere, “to live” (Merriam-Webster, 1993b). It is in this original sense of the word that the YTK teenagers continue to live, reminding us how, in spite of disturbing probabilities, our lives have value beyond their numbers. As 17-year-old Wes noted, “even when [campers] go through hard times / and life sucks. / They still enjoy it.”

The numbers that mattered most to Wes were scores. “You could count on Wes to suggest a round of ball tag, a quick tennis match, a game of backyard dunk ball, or just playing catch,” recalled his family in his 2016 obituary. He met his future wife on the basketball court at the University of Utah where he graduated with a bachelor's degree in communication. Later, Wes earned a master's in business administration (MBA) from the University of Phoenix. He also served a two-year mission in Minneapolis, Minnesota, for The Church of Jesus Christ of Latter-day Saints. In his 30 years, Wes's greatest joy was his family, his wife, and three children. “Wes lived with verve and joy,” wrote his family, “and faced his mortal struggle with uncommon grace, strength, and humor.”

After YTK, Stephen graduated from high school in Mountain Home, Idaho, and attended Portland Bible College and Patton University. He completed a one-year ministerial internship with the Church of God and received his ministerial credentials. “He did a lot of living during this time,” noted his father. Stephen, who received a heart transplant as an infant and a kidney transplant at age 12, served as a children's pastor at two churches, in addition to working in construction, security, and social work. In 2016, he traveled to Pakistan to marry his wife in a traditional ceremony. The next year, Stephen contracted influenza and unexpectedly died after 23 days in intensive care. “Though his life was only 26 years long,” said his dad, Larry, “he was able to touch a lot of lives, experience true love and walk out his destiny.”

So many other former campers are living out their destinies. BreaAnna married a fellow counselor at Camp Kostopulos, is student-teaching second graders at Magna Elementary School, and will graduate from the University of Utah in 2021. Jason is an actor and independent filmmaker living in the Salt Lake Valley. Jennifer is mom to three teenagers in Syracuse, Utah. Nicole, inspired by Pam Grant, practices as a licensed clinical social worker in Centerville, Utah. Laura graduated with a bachelor's degree in physics from the University of Utah and is applying to medical school. Had I time enough I would have followed up on milestones of all of the campers.

Life posttransplant continues to present challenges to some. Sarah underwent a combined kidney-and-liver transplant at age 22; she had had a liver transplant as a young child. Two other kidney transplant recipients were back on dialysis last summer, each awaiting a new donor organ. A third camper was scheduled for a retransplant in September until the day before her surgery when lab tests showed high antibody levels that likely would have caused her to reject the new kidney. “It will be better in the long run,” she wrote on Facebook. “I'm just not a patient person, so it's hard for me to just wait.”

Anthony, who contemplated his survival chances as a 12-year-old, recalled recently how it felt to wait. When he was almost 9 years old, Anthony received a kidney transplant from his mother. Six years later, his body rejected it, and he was back on dialysis for 1 year – including a summer stay at the Ronald McDonald House in Salt Lake City with his mother who drove him to YTK every day. After camp, he received a second kidney from one of his maternal aunts. It functioned for 4 years. While on dialysis yet again, Anthony completed an abbreviated mission for The Church of Jesus Christ of Latter-day Saints and married. During his undergraduate studies in health-care administration at BYU-Idaho, Anthony underwent his third kidney transplant. “Let me tell you a story about that,” he told me over the telephone.

“While I was on dialysis, I was waiting for the call from the transplant center. One night, we got a call. We waited anxiously for a couple of hours, but it wasn't a match. Then, another time, they gave me a call. They said, ‘You better come down to Salt Lake.’ I got into the pre-op area and even had an iv. The doctor came in and said, ‘Anthony, this kidney is not in amazing shape.’ I asked him, ‘Would you recommend taking it?’ ‘Probably not,’ he said. So, by the time I got the third call, I was making jokes with my wife on the way to Salt Lake City, telling her she'd see the billboards she was trying to read on the way back. I was convinced we'd be coming back in a couple of hours. And I was okay with that.

“It's lasted longer than any of my other kidneys,” he said of his third kidney. Anthony completed an MBA at Washington State University and, for the past 3 years, has been the executive director of a rehabilitation and wellness center in Riverton, Wyoming. That, too, has presented a unique set of challenges for a self-described “contention-adverse person,” which, with his retransplants, seems to explain his moniker on Facebook: “Just your average everyday superhero to some and your average everyday super villain to others.”

Does Anthony consider himself a survivor? “I guess it depends on the context being used and the definition being applied. It's hard,” he said. “I often see the word thrown around with less regard as to whether or not it really fits the situation. For that reason, it loses its power.”

“What matters,” Anthony said, “is what we do every day. To be honest with ourselves; to think about what we're saying.”

Eighteen years after our first poetry workshop, the significance of what the YTK teens had to say not only survives but matters in ways none of us could have foreseen. We are in the throes of a worldwide pandemic. The coronavirus (COVID-19) has suspended the normality of life, leaving uncertainty looming over our foreseeable future. Yet, living with uncertainty is what the teenage transplant survivors, like other chronically and terminally ill patients, confront every day. When we read their poetry, we take in their words, we breathe their experiences into our bodies, and we can be changed, not only bearing witness to their suffering but joining them as we rise above uncertainty to peer at the infinite possibilities that gratitude for our human lives however broken affords. Is that not indeed miracle-like?

Susan J. Sample

September 28, 2020