Bioethics Forum Essay

Beyond the Gift of Life: What Else to Expect from an Organ Transplant

“Between the time of my heart transplant and the moment my hair began to fall out, I arguably had suffered enough,” writes Leilani R. Graham. “Transplant brought four open-heart surgeries, ten days on ECMO, an intra-aortic balloon pump, delirium, necrotizing pneumonia, and so much muscular atrophy that I had to re-learn how to walk. [Transplant] was not the miracle I was hoping for.”

Candid essays by Graham and 16 other transplant recipients reveal details of recovery from the surgery that are not widely known or discussed. While not minimizing their profoundly great fortune in receiving a transplant that saved their lives, the authors argue that better communication is needed between patients, their doctors, and their loved ones about what to expect after surgery. The essays appear in the journal Narrative Inquiry in Bioethics (NIB).

Graham felt unprepared for the long recovery she experienced. She describes her hair falling out in clumps, her skin developing abrasions at the slightest touch, her “explosive and terrifying” mood swings, and her inability to recognize her face in the mirror, leaving her “angry, hurting, and scared.” Graham relays how a simple but compassionate response from one of her physicians made all the difference. “The nature of my distress was finally realized when a doctor stopped typing on the computer, put his hands in his lap, and turned in his chair to face me. ‘I’m sorry. I’m a man. Losing hair is a concern. But I know especially for women, losing their hair can be extremely upsetting.’”

Graham adds, “Just a brief moment—a break from the lab values and charting and endless discourse on the importance of eating right. For the first time, I felt seen as myself again, for who I was.”

Most of the authors indicate that transplant centers seem too heavily focused on the needs of the organ, not the needs of the recipient. There is an incentive for this, as first-year patient and graft survival metrics are used for regulatory monitoring of transplant hospitals. But the authors suggest that transplant professionals should focus more on patient-centric goal setting. A recurring theme in the stories is the importance of finding a transplant physician who will address the concerns of the recipient rather than focusing solely on the transplanted organ.

Ill for many years with chronic kidney disease, Abdou Simon Senghor writes about his struggle to adhere to the strict medication regimen his doctors put him on after his kidney transplant, when he was able to go out and live a more active and full life. “Patients are interested in transplantation because it allows them to flourish as human beings,” he writes. “As a transplant recipient, newfound freedoms sometimes create problems with the correct timing of medication; I go to bed late because I come home late from parties or I work late.” He suggests that health care professionals make the effort to understand patients’ activities and, where possible, schedule medications and other treatments to fit into them.

As NIB commentary authors Vidya A. Fleetwood, Roslyn B. Mannon, and Krista L. Lentine recognize, “Senghor wants to be seen as a person with a transplanted kidney, not as a kidney alone.”

Organ transplantation clearly saves lives and can improve the quality and length of a recipient’s life tremendously, but it often comes with more side effects and struggles than many people anticipate. While the authors discuss such challenges, it’s clear that most feel they have received a great gift. They are compelled to give back. Several authors now work in transplant-related careers, volunteer for organ donation organizations, or participate in research or patient advocacy. This desire to give back can have positive impacts, but for some recipients, it can manifest as a symptom of survivor’s guilt when they feel they will never be able to adequately repay their donors.

Antonella Colace describes the feelings she had after her young daughter received a liver transplant from a deceased donor. “For my daughter to live, someone else had to die. I felt like an executioner. Guilt grew in my heart—we were thieves.”

Many of the authors long to express gratitude to their donor’s family. When they do try to contact the family, many get no response, and this can be painful. “I have not stopped thinking of my donor and their family in the years since returning home from [the hospital], although I only know minimal details about them,” Allen Callaci writes. “I have reached out with written expressions of my enduring and unending gratitude over the years through the proper channels but have yet to hear back.”

Some of the authors write about the difficulties they experienced when compassion and understanding from family and friends faded—the result of incorrectly assuming and expecting that the recipient will be rid of their ailments post-transplant. Todd Frantzen notes that his relationships have changed since undergoing a triple organ transplant. “At the beginning of my illness, family and friends supported me with words of encouragement and an outpouring of love. However, as time moves forward, so have they.”

Valen Keefer, who had a kidney transplant as a child and a liver transplant as an adult, writes, “Adapting to a new normal requires navigating dating and relationships, considering having a child, and experiencing stressors about the future like how long will my organ last? Recipients can feel guilty talking about anything but gratitude because they were lucky to receive a second chance at life. However, some go through a phase of ‘now what’ because after being sick for so long, returning to good health and integrating back into society can be an adjustment.”

Nearly all the authors describe unrealistic expectations about their transplant. “Transplantation is often inaccurately believed to be a cure for a specific illness; however, as many of the writers attest, they were not magically cured by receiving a new organ,” writes Heather Lannon. “Post-transplant, the recipient must adjust to a new regimen of lifelong medications, continue to attend medical appointments, and may experience new and ongoing health issues.”

While the authors are grateful for their “gift of life,” their lives are forever transformed, often in ways the authors did not anticipate. The stories provide an opportunity to reflect on the experiences of organ recipients and consider how transplantation professionals and others who love and care for them can better support recipients on their continued path and better manage expectations for life after transplant.

Heidi Walsh, MPH, CHES, is a senior project manager in the Bioethics Research Center at Washington University School of Medicine in Saint Louis. @hamp42_heidi