Black man looking in the mirror

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

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Hastings Bioethics Forum essays are the opinions of the authors, not of The Hastings Center.

  1. You might be interested in following article on exactly a similar issue: Orfali K., Anderson- Shaw L.,” When medical cure is not an unmitigated good” Perspectives in Medicine and Biology, (2005) vol. 48, n°2, April:282 – 92.

  2. Thank you for sharing these heartfelt stories, I was particularly moved by Leilani R. Graham’s story. I accessed the essay on the NIB website.
    Graham’s struggles and challenges following her heart transplant deeply resonate with me, especially from my experience working at a major heart transplant hospital. It’s sadly common for patients to enter this journey without a full understanding of the extensive recovery process, the significant adjustments to daily life, the possible complications, and the deep physical and emotional impacts that follow. Her story illustrates this gap in patient education and support. This story highlighted the need for a more comprehensive approach to patient care, not just the organ and metrics that revolve around it. It’s evident that while the focus is often on the physical recovery, the emotional and mental challenges can be just as daunting, if not more so. Her narrative is a powerful call for healthcare professionals to not only prepare patients for the physical realities post-transplant but also to offer robust support for the emotional and psychological journey that ensues. I personally cannot place a number on how many times patients would tell me that had they known what the process entails, they would have never done it.

  3. Thank you so much for sharing this perspective. I must admit, I did not fully appreciate the gravity of life after transplant until reading this story. It really provides a thought-provoking and insightful look into the lives of organ transplant recipients. While the authors convey a deep gratitude for the gift of life they have received, they also candidly share the unexpected struggles that can accompany transplantation. I was struck by the resilience and strength they embody. I imagine it must be difficult to talk about. In one way, one should feel ‘lucky’ to be in a position that affords a new opportunity at life; I can only try to imagine the guild that may be felt during times of frustration with the life after transplant. The light that was shed on the emotional challenges that transplant recipients often confronts was moving. The feelings of survivor’s guilt, anxiety about the future, and uncertainty about their ability to resume normal life are common among recipients, and often something I never fully considered before. As mentioned before, as an outsider to this world, I did not fully appreciate other perspectives other than feeling “lucky to be alive” as that is often how it is conveyed, and therefore perceived. It is evident that these emotions can be overwhelming, and it is essential for recipients to seek support from loved ones and healthcare professionals.

    One of the key takeaways from the blog post is the importance of setting realistic expectations. Transplantation is not a quick fix or a magical solution; it is a complex and transformative journey that demands ongoing medical care, emotional support, and lifestyle adjustments. It really emphasizes the significance of identifying a transplant team that makes the patient goals a priority. This coupled with the need for support and mental health maintenance is paramount. This article has made me more empathetic towards those who have received transplants, but have given me a newfound appreciation for the struggles they encourager not only before and during transplantation, but thereafter as well.

  4. Thank you for sharing the stories of transplant recipients and their experiences. It was extremely thought-provoking! This post was particularly relatable since I used to work as a transplant ICU nurse. I have taken care of many transplant patients and have seen how their lives changed positively. However, I have also seen how many patients had trouble assimilating to their new normal. One part that resonated with me was Leilani R. Graham’s story of finally feeling seen as a person, and not as an organ. This is a key point that healthcare professionals must actively remember and practice. Switching this perspective will allow for a better patient experience and improve the adjustment process.

    The post touches up on the misconception that receiving a transplant would be a cure of the disease. Many do not know that receiving an organ transplant will mean new routines, restrictions, and possible complications if these were not adhered to. One point from the post that struck me was when Todd Frantzen talked about his relationships after the transplant. Many of his loved ones were there for him in the beginning stages, but once he received the transplant, many believed that this cured him. This shows the importance of educating others about post-transplant expectations. Transplant recipients have new medication regimens to follow with strict schedules, such as anti-rejection medications. Healthcare professionals must inform the transplant recipient and their support system about such expectations. Prior patient and family education will enable ease of transition and maintain a support system.

  5. Thank you very much for bringing forward the true challenges that are faced during an organ transplantation. Having worked transplant for several years, your message has resonated well with me. Each individual story highlights the many avenues of the road to recovery and how difficult it is to return to your normal life. Graham’s story truly brought me back to work and the things I witnessed. I remember seeing doctors be more concerned about their success rate than their patients. Always checking surgical incisions and leaving with saying almost less than a sentence.

    I believe that it is important that hospital education bring this to light to improve the well-being of these patients and truly make transplant what is to be. Support should always be given throughout the process, and it is important that the gap between patient’s and the medical team is addressed. Care should encompass the entirety of the patient’s, not their diagnosis alone.

    1. Thank you for giving me the opportunity to read and learn from your insightful essay. This was an extremely moving piece, as it allowed me to better understand true thoughts and feelings that occur in the mind of a recipient during organ transplantation. Your narrative shed a light on some unspoken challenges that are faced by these recipients. As a former ICU nurse, it was really eye opening to see this journey through a different lens, such as Graham’s. The emphasis that is stressed on the need to improve communication between health professionals, patients, and their families is of vital importance as it can have such a significant impact on these recipient’s well being. The notion that transplant centers would prioritize an organ over a person is both shocking and disheartening. Senghor’s words asking to be seen as a human being and not just a transplanted kidney will resonate with me moving forward. It is extremely evident that the journey to transplantation takes not only a physical but an emotional toll on these recipients, and we as providers must strive to center our focus on both factors with empathy, communication, and holistic care.

  6. Thank you for giving me the opportunity to read and learn from your insightful essay. This was an extremely moving piece, as it allowed me to better understand true thoughts and feelings that occur in the mind of a recipient during organ transplantation. Your narrative shed a light on some unspoken challenges that are faced by these recipients. As a former ICU nurse, it was really eye opening to see this journey through a different lens, such as Graham’s. The emphasis that is stressed on the need to improve communication between health professionals, patients, and their families is of vital importance as it can have such a significant impact on these recipient’s well being. The notion that transplant centers would prioritize an organ over a person is both shocking and disheartening. Senghor’s words asking to be seen as a human being and not just a transplanted kidney will resonate with me moving forward. It is extremely evident that the journey to transplantation takes not only a physical but an emotional toll on these recipients, and we as providers must strive to center our focus on both factors with empathy, communication, and holistic care.

  7. It is crucial to provide patients with both the positive and negative aspects of organ transplants because omitting the latter is not informed consent. After reading your article, I gained a greater appreciation for the importance of patient education and prioritizing the patient. Organ transplant centers should prioritize patient-centered care, not just the organ. Healthcare professionals often neglect to involve the patient in medical planning, interventions, and discussions, and this is also true of organ transplant outcomes. It is crucial to discuss setting realistic expectations for both physical and emotional recovery. This can help ensure that everyone involved understands what to expect and can prepare accordingly. Healthcare works best when patients understand their condition and choices and are actively engaged in their care. This is the essence of informed patient care.
    To ensure informed care, there are several patient teaching methods that can be helpful. These include using teach-back techniques, assessing the patient’s understanding of the transplant process, providing informational handouts, and involving the patient’s support person in the workup before the transplant. These things are of upmost importance when trying to manage transplant recovery expectations. Healthcare professionals and patients often prioritize lifespan over quality of life regarding organ transplants. A clear understanding of post-transplant expectations is crucial for ensuring quality of life post transplant.

  8. Thank you for sharing this. Leilani Graham’s story particularly stood out to me. These narratives of transplant recipients’ experiences are incredibly important for us to keep in mind as we move forward with transplant advocacy. They allow us to ultimately keep the human condition at the forefront of transplant care.

    It is evident that patients face physiological difficulties following surgery, including pain, discomfort, infection, exhaustion, and side effects from their strict regimen of immunosuppressive medications. But, the discussion here has highlighted the psychological, social, and educational difficulties patients reckon with, oftentimes without explicit support or guidance from their physician. Psychological difficulties can include a constant fear of rejection or graft dysfunction causing anxiety, mood swings due to physiological side effects, stress from trying to keep up with medications, or survivor’s guilt stemming from this notion that they took someone else’s life. Social difficulties can include self-isolation from communities due to an impaired self-image, navigating a difficult reentry into society, lack of social support, and, of course, socioeconomic difficulties. Regarding the latter point, though there have been legislative resolutions passed recently, there is still great potential for change. As of the end of 2022, a new extended Medicare benefit (Part B-ID) went into effect. It covers all FDA-approved immunosuppressive drugs indefinitely, as opposed to only 3 years prior to the legislative change, for kidney transplant recipients. It certainly is progressive for the transplant community, but this particular benefit neither extends to other transplant medications (e.g., for infections, etc.), medical equipment, and home and preventative services nor to other organ transplant recipients, including those receiving livers or hearts, evidently (Department of Health and Human Services, 2022). Expanding this coverage to all necessary medications and services and to all transplant groups will improve accessibility and, thus, enforce just practices. It will also cut healthcare costs in the long run, although Congress may not think so. Educational difficulties entail feeling inadequately and unclearly informed on challenges following discharge. The onus should be on the physician to discuss not just the technicalities and logistics of medication management but also these other aforementioned difficulties the recipient may encounter. An extra 5-10 minutes of a physician’s time can have a profound effect on the recipient’s comfort with and preparedness for the long recovery process. Medicine is a humanistic endeavor that cannot be lost on physicians after a successful transplant, as it is the patient who is the center of the narrative, not the organ. I hope that stories like these are shared extensively because they have a visceral effect that can be translated into policies and effective change.

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