From the Operating Room to Everyday Life: The Sustained Liminality of Kidney Transplant Recipients

Participants

Since I had spent time with hemodialysis patients who had been waiting for a cadaveric organ donation for more than five years, I was able to comprehend how the liminal experience affected their physical, psychological, social, and economic existence. Therefore, although I had also conducted fieldwork with both cadaveric and living liver recipients, I could truly grasp what happens after transplantation only through those prolonged encounters with patients suspended in the wait for kidney donation. For this reason, I included only living and cadaveric kidney recipients whose pre-, peri-, and post-transplantation processes I personally witnessed.

The sample consists of 22 cadaveric kidney recipients and 26 living kidney recipients, totaling 48 participants. Participants who received kidney transplants from living donors included 18 men and eight women, aged between 23 and 71 years (mean age: 47.3). Most were married (n = 17), while the remainder were single (n = 7), divorced (n = 1), or engaged (n = 1). The majority (n = 17) were parents. Regarding educational background, ten participants had completed high school, four held college degrees, three had finished middle school, three had completed elementary school, two had received primary education, and one had graduated from a vocational school.

Participants who received cadaveric kidney transplants included eight men and fourteen women, aged between 26 and 66 years. Most were married (n = 12), while the remainder were single (n = 7) or widowed (n = 3). In terms of education, nine participants had completed high school, two held college degrees, one had finished middle school, ten had completed elementary school, and one had earned a master’s degree (Supplementary Material 1, 2).

Data Collection

I aimed to explore how transplantation—often imagined as a miracle promising a second life—was lived in everyday realities, and whether the liminal experience of being suspended between life and death truly ended with organ donation. To this end, I documented participants’ pre-, peri-, and post-transplantation narratives through in-depth interviews conducted between August 28, 2022, and November 18, 2023. During my fieldwork, I encountered more than 120 living and cadaveric kidney or liver recipients. Since most kidney transplants in Türkiye are performed using organs from living donors, I employed a purposive sampling strategy to ensure that both cadaveric and living organ recipients would share comparable experiences. Accordingly, I selected participants who had been registered on the cadaveric organ waiting list for at least two years in both groups. I excluded those whose pre- or peri-transplantation processes I had not personally observed. Another inclusion criterion was my prior experience with hemodialysis; therefore, four living liver and eight cadaveric liver recipients were excluded from the sample.

This study is grounded in two complementary sets of qualitative data. The first derives from a series of follow-up interviews with transplant recipients conducted during the pre-, peri-, and post-transplantation phases. Through regular home, work, and clinic visits, I closely observed their recovery processes and everyday adjustments to life after transplantation. The second dataset consists of detailed field observation notes. From the onset of the transplantation procedures, I systematically documented what I saw, heard, and felt—capturing not only clinical routines but also the subtle emotional exchanges and social dynamics that unfolded during participants’ hospital stays and subsequent visits. Together, these two sources provided a holistic understanding of how transplantation is experienced, narrated, and embodied across medical, social, economic, and domestic contexts.

Data Analysis

All audio recordings were initially transcribed using Transcriptor. Each transcript was subsequently checked for accuracy by listening to the recordings in full and making the necessary corrections. To enhance contextual understanding, field observation notes were systematically matched with the corresponding transcripts.

Thematic analysis was employed to examine the data. To begin, I familiarized myself with the material through repeated readings. As Branch observes, thematic analysis is particularly well suited to capturing participants’ experiences, meanings, and realities. However, I was already acquainted with the content from data collection, and working with the printed transcripts allowed for deeper immersion (2021). At this stage, I applied color coding to highlight emotional expressions—such as sorrow, hesitation, disappointment, and joy—and to flag potential themes.

Following the initial stage, I imported all transcripts into MAXQDA 2024 and coded them systematically to ensure no detail was overlooked. I then grouped similar codes into preliminary themes and iteratively reviewed and refined them until they accurately represented the dataset. Because the analysis relied primarily on participants’ own interpretations and required minimal researcher inference, I did not calculate an inter-rater reliability score (McDonald et al., 2019). Next, I defined and named each theme, articulated its significance, and supported it with illustrative quotations from participants.

The themes emerged organically from participants’ everyday actions, emotions, and reflections. To indicate the frequency with which each theme appeared across the dataset, I included numerical markers within the text, adding a modest quantitative layer that illustrated the recurrence of themes within the qualitative material. I conducted all interviews and analyses myself, which might raise concerns about potential bias. To mitigate this, I kept reflexive field notes, documented analytic decisions in a research diary, consulted peers for debriefing, and cross-checked emerging themes with raw data and observation notes (Lincoln & Guba, 1985). My prolonged engagement in the field and familiarity with participants also deepened contextual understanding and enhanced the credibility of the findings.

Ethical Considerations

The real names and contact information of the informants were kept only on wet-signed consent forms, stored in a drawer accessible solely to the author. Each interview conducted with participants was organized into a separate folder. The audio recordings of the interviews were transcribed using Transcriptor. Since I was constantly in the field, I initially focused on collecting data. After reaching data saturation—a point in data collection when new information no longer yields fresh insights into the research questions—during the process of preparing the material for analysis, I employed pseudonyms that would remind me of the participants while also ensuring their confidentiality. This approach enabled me to maintain both a personal connection in my mind and a secure coding system within the dataset. My handwritten observation notes for each participant were then matched to the corresponding pseudonyms and compiled into memos. I only contacted volunteer participants, inviting them to take part in my research without offering any compensation beyond my time and full attention.

Before commencing fieldwork, ethics approval was obtained from the Bartın University Social and Humanities Research Ethics Board (Approval No. 2022-SBB-0055) on February 22, 2022. All participants provided written and signed informed consent before the interviews. In addition, the Ministry of Health of Türkiye granted official research permission (No. 24-E-56733164) on August 22, 2022 (Supplementary Material 3).

Reflexivity Statement

This study is shaped by my reflexive engagement as a woman, a mother, and a sociologist conducting long-term ethnographic fieldwork with individuals whose lives are deeply intertwined with organ transplantation. For some, transplantation is central to their professional roles; for others, it is a matter of personal choice, a condition of survival, or an act undertaken to give life to others. This multiplicity of engagements informed my sensitivity to the diverse moral, emotional, and cultural meanings through which transplantation is lived and understood. My sustained presence across dialysis centers, hospital wards, and participants’ homes enabled me to develop close, trust-based relationships, granting access to intimate narratives surrounding illness, waiting, transplantation, and everyday life after surgery. During the writing of this paper, I lost my mother after nine days of hospitalization in one of the wards where I had previously conducted my fieldwork. Although my research had long engaged with organ donation and transplantation as morally and emotionally demanding processes, this personal experience profoundly altered my understanding of waiting. Until that moment, I had not fully grasped the intensity of waiting outside an intensive care unit—the suspended time, the emotional exhaustion, and the moral weight carried by families anticipating uncertain outcomes. One month after leaving the field to analyze my data, I found myself inhabiting the very position my informants had described. I experienced firsthand the anticipatory liminality of waiting—caught between hope, fear, and the unspoken possibility of loss. I had recurring nightmares in which ICU physicians announced my mother’s brain death and directed me to a family meeting to decide whether to proceed with the donation of her organs. During this period, I gathered my family to discuss the possibility of organ donation, should the question arise, to ensure that my mother’s death, if it occurred, might give life to others. This moment transformed my analytical distance, deepening my empathy while also sharpening my reflexive awareness of how personal experience can reshape interpretation. Rather than collapsing the distinction between researcher and participant, this encounter reinforced the ethical responsibility to engage in reflexivity. It compelled me to revisit my data with renewed attentiveness to the affective dimensions of waiting, uncertainty, and moral decision-making that structure transplantation processes. This experience did not replace participants’ voices but re-situated my listening—allowing me to recognize, with greater clarity, the depth of what my informants had already shared.

Health as an Intermediated Space

Transplanted health is a grey area (Hoel Felde, 2011), a spectrum in which, on one side, patients live between the possibility of returning to hemodialysis and the obligation to adhere to the strict rulings of test results, framed by lifelong diet, medication, and health practices, over which others, the healthy, can afford to take risks. This space surpasses hemodialysis, instilling a sense of power over death. However, the fear of graft rejection and medication-related symptoms—such as fatigue, nausea, mood swings, and dizziness—cast a shadow of helplessness that recalls the days of hemodialysis. What Frank (1997) terms “deep illness” evokes a state of liminality for the transplanted, where illness is, was, and remains ever-present, continuously shaping the contours of one’s life.

For many patients, health exists in an intermediated space—neither the constrained life of hemodialysis nor the fully restored normality promised by transplantation. Transplantation is imagined as the threshold that will finally release them from this liminal condition. My earlier encounters with dialysis patients revealed that the meaning of “health” was conceived not simply as the absence of illness but as a return to a pre-illness self-marked by freedom of time, economic productivity, sexual vitality, domestic harmony, and a body unburdened by nausea, dizziness, or relentless fatigue. In this sense, transplantation becomes an aspirational horizon—a symbolic exit from liminality.

However, the postoperative period complicates this imagined transition. Accompanying recipients before surgery, I observed how transplantation was cast almost as a magical event capable of erasing all traces of dialysis. Patients and their relatives invested the operation with such extraordinary hope that they perceived their surgery as uniquely blessed, as if nothing adverse could happen to them. This overwhelming optimism obscured their ability to process medical information. Despite being given brochures in Q&A form and receiving detailed briefings, they repeatedly posed the same questions to surgeons during the rounds in the first weeks after surgery. Their fixation on the transformative promise of the operation overshadowed the realities of postoperative discipline, risk, and uncertainty.

In this intermediated space—between the machine and the imagined cure—patients inhabit a form of sustained liminality. Health, here, is not a stable condition but a continually negotiated state, shaped by the unpredictability of medical markers. Test results may suddenly signal deterioration even when recipients feel perfectly well; conversely, their laboratory values may appear flawless while they struggle with persistent, unexplainable fatigue. This dissonance between bodily experience and biomedical evidence deepens the sense of liminality, positioning patients in an ongoing negotiation between how they feel and what the numbers dictate. Furthermore, lifelong dependence on immunosuppressants replaces the imagined disappearance of dialysis-related symptoms—yet many of these symptoms persist, merely transformed rather than eliminated. While many recipients (n = 34) reported that medication-related side effects heightened their anxiety, several (n = 5) raised a more existential question during follow-up visits: “What kind of health is it if one must take medicine?” Furthermore, some recipients developed medication-induced food sensitivities. While many imagined transplantation as a return to the pleasure of eating, Hüsnü’s words captured the broader sentiment: “I have nothing to say against the medicine itself, but I wish I did not have to be afraid while eating. Everything upsets my stomach. Can a person be afraid of eating? I am. Whatever I eat, it hurts me. The thing I longed for the most was eating and drinking freely. We changed so many medications, but it still did not go away.” Sema’s awareness of her sustained liminal position extended far beyond the side effects or the postponed pleasure of eating. Eight months after the transplantation, she had just resumed dating, hoping to find a suitable partner. However, her optimism quickly faded. “After men learn that I am transplanted, they do not call back,” she said. “I used to believe I could not get married because of dialysis. However, now I understand—we are not as desirable as healthy women. Men do not want to be involved with someone whose life feels like it is always on the edge.”

Living With Others’ Parts

While living organ recipients are often watched by their donors—who monitor whether the donated organ is being appreciated through adherence to medication, diet, and the avoidance of risky habits such as alcohol and smoking—cadaveric organ recipients, by contrast, tend to withdraw from anything that might jeopardize the well-being of their transplanted organ, believing that being called from the waiting list is a divine act. Fatma, recalling the night her husband was called from the National Organ Center, described it as a “gift of God” (Allah’ın hediyesi). Rukiye, on the other hand, recounted how she had lost hope after being deceived by her sisters, who had promised to donate a kidney but instead made her pay for their flight tickets so that they could visit their children. “When the phone rang, I had already given up,” she said. “There was only my husband with me. During the illness, everyone else left one by one. He could not donate his kidney because I was afraid his mother would resent me if something happened to him. I had lost all hope. At that moment, when they called me, I thanked God—He had seen my desperation.” Most cadaveric organ recipients (n = 18) described feeling a moral obligation to value the transplanted organ, acknowledging that another person died and that many others had prayed for such a chance. Surrounded by his children, Kadri recounted with tears the moment he received the call from the center—he performed a farewell prayer: “As soon as I was invited to the hospital, I performed a ghusl. It was night; my children were sleeping. I wrote a letter telling them how much I love them. Then I kissed them without waking them up. I hugged my wife—she had to stay with the kids. My elder brother took me to the hospital. It felt like the last time I would see them. At that moment, I prayed only to see them again—alive.” This sense of obligated gratitude becomes most visible through the ritual acts of cadaveric kidney recipients—such as naming the transplanted organ (for instance, Tuna or Suna, imagined names of their donors), performing charitable deeds on behalf of the donors, including offering scholarships, funding soup kitchens during Ramadan, or planting fruit trees in public spaces. Obligated gratitude toward donors is also evident in the relationships between living kidney recipients and their donors, where donors often monitor how the recipients appreciate the transplanted organ. Most living kidney recipients reported that their donors behaved as if the donated organ still belonged to them—only now residing within the recipient’s body. The sense of obligation creates a liminal ownership toward the donated organs.

Naming her kidney Tuna, Zeynep gently patted her side where the transplanted organ was located. “My dear Tuna,” she said, smiling. “How could I not appreciate him? I believe my kidney once belonged to a young man—that is why I call him Tuna. He belongs to both of us now. He lives inside my body, and that is why I am always afraid of losing him. I believe he will stay with me as long as I truly appreciate him.” Pouring tea into a glass, Burçin looked at the picture frame hanging on the wall. After being discharged from the hospital, she followed the local news to find out who her donor was. She visited all the grieving families whose members had appeared in reports about fatal accidents that had occurred in and around Ankara the day before and on the day of her transplantation. Eventually, she discovered that her donor had died in a motorcycle accident. “He left the world, leaving his kidney to me,” Burçin said softly. “I feel he also left his family to me. That is why I want to be part of them. His parents told me they feel as if he is still present whenever I am around. I feel this kidney belongs to both of us.” Almost half of the cadaveric organ recipients (10 out of 22) and the majority of living organ recipients (21 out of 26) reported experiencing either tangible or spiritual forms of shared ownership of the transplanted kidney with their donors.

To Be Forced to Heal

Accounts of the transplanted portray transplantation as a passage between hemodialysis and a state of health, at least as much as transplantation can provide. Not only do the recipients, but also those around them, expect them to quickly return to their everyday lives once they are discharged from the hospital. Even though surgeons inform recipients and their families about the possible short- and long-term consequences of the operation, the close circles of recipients still expect them to resume what was missed during the hemodialysis period immediately. While Kerem’s brothers constantly pressured him to find a job, assuming that the transplantation would fully restore his physical strength, Hüsnü’s brother-in-law accused him of being lazy and spoiled, comparing him to other transplant recipients who had already returned to work. Similarly, Müzeyyen’s family persistently urged her to become a mother, believing that she was growing too old for childbirth and that the transplantation would remove the bodily obstacles to pregnancy—even though she might face the risk of graft rejection if she became pregnant.

The roles that the recipient is expected to resume within the framework of “normalcy” after transplantation appear to be interpreted in parallel with traditional gender roles. Specifically, men recipients (17 out of 26) were expected to demonstrate productivity, physical strength, and vitality. In contrast, women recipients (14 out of 22) were expected to display cheerfulness, self-care, and renewed engagement in their maternal and spousal roles. Expressions such as “Come on, you have had the transplant now,” “You should be smiling—your troubles are over,” “Why don’t you go back to work already? Was the kidney given to you so you could stay at home?” “When will you have children? You are healthy now,” “You got the transplant, why are you still lying around?” and “You finally found a kidney. Yet, you are still complaining” illustrate how those around them pressured informants to recover and resume what is perceived as a “normal” life. Male recipients, in particular, were pressured by those around them—and especially by their donors—to appear well and return to work, as they were expected to resume their financial responsibilities toward their families. Ramazan, Alp, and Umut were pressured by their donors, who had given them kidneys with the expectation that they would take care of their families. Kerem and Sezai returned to work earlier than medically advised, as their donors constantly complained that the recipients were procrastinating and avoiding their responsibilities. Alp worked in a car repair shop, where he had to wear a mask to protect his lungs from the chemical fumes of paint.

When I visited him at his workplace, he was lying under a car he was repairing, his face and hands covered in dirt. Although he was supposed to avoid movements that could strain his kidney, staying at home for more than two or three months had already sparked gossip in his neighborhood. “Hocam,” he told me, “I started going out in the mornings and coming back in the evenings, so that people would see me leave the house. Then I realized that, apart from the coffeehouse, there was nowhere else to go, so I began coming to the shop. Once the shop opened, people started bringing in work. So I had to keep working. When my doctor found out, he was worried—but what can I do? I came back early because I kept thinking, what would the neighbors say otherwise?” When I visited Gökdeniz at his appliance repair shop, I noticed that his apprentice served customers almost as skillfully as he did. He sensed my concern and said, “You know, my wife gave me this kidney. A month after I was discharged, my father-in-law started complaining. Even though the shop was running, my people were bothered that I was not the one taking over the work. So at least I come here for a few hours each day—to be seen by people.”

Living With Different Kinds of Fears

Once the machine had cleansed the body of all toxins, this responsibility was transferred to the individual’s own control. Negligence in diet, therefore, could lead to graft rejection—signifying a return to the former liminal space where hemodialysis had once defined the patient’s reality. Staying hopeful for the future, Yaprak became obsessed with what she ate. She refused to consume salt or sugar and gave weekly urine samples to check whether her cadaveric organ was functioning well. “I cannot afford to waste this kidney that I waited six years for,” she said. “When I was on dialysis, I would eat everything the day before the session. Now I am afraid to tire the kidney,” she added, touching her side. “I cannot afford to gain weight, and I cannot afford to lose it.” Moreover, years of waiting on the transplant list not only compel recipients to question life and relationships but also teach them the meaning of donation itself. Living organ recipients, who had barely managed to obtain a kidney from a relative, learned what it truly means to appreciate a second life sustained by a living person’s organ. Nilgün had waited two and a half years for a donation. When her husband finally gave her his kidney, she said, “My brothers and sister did not even offer to be a donor. Now my husband always reminds me that my family was not there when I needed them. So I know for sure—if something happens to this,” she said, pointing to her side, “there is no one who will come forward again.”

Cadaveric recipients, on the other hand, experienced transplantation by confronting the painful reality that they could not—and perhaps would never—receive a living donation. These experiences not only give rise to fears of graft rejection but also sustain them, shaping the moral and emotional framework through which recipients make sense of their renewed yet fragile lives. The transplanted risk—what Canguilhem calls their “alternative normality”—a fragile equilibrium through which they strive to experience health as thoroughly as “normal” people do (1978). İbrahim, for instance, confessed that he drank alcohol after giving his blood sample: “I do not like the taste of alcohol,” he said, “but it makes me feel normal again. I drink it only after the appointment, fearing the doctor might notice. I do not want him to know—if he finds out, I will be banned from the waiting list forever.” His narrative reflects a distinctly liminal existence, in which he oscillates between the fear of returning to dependence on the waiting list and the anxiety of losing his relational bond with the doctor who represents his fragile connection to life itself.

While coping with resentment toward relatives who did not offer a kidney when it was needed, the prospect of graft rejection—due to inadequate care of a cadaveric kidney—also signifies a return to the waiting list for an indefinite period. Cadaveric organ recipients were well aware that if they were to lose the graft because of behaviors such as skipping medication, consuming alcohol, or smoking, they would be permanently removed from the waiting list—condemned to either lifelong dialysis or the uncertain hope of a living donation. This reality is apparent among occasional alcohol consumers. Fikret, Mehmet, and Eray drank occasionally; whenever they did, they deliberately skipped their follow-up appointments, waiting until the alcohol would no longer be traceable in their blood tests. The liminal space, once filled with expectations and the desire to be freed from the machine, shifts into another, where the transplanted experience immunosuppressant- and transplantation-related symptoms intermingle with daily life, accompanied by the constant fear of losing the graft. Nurgül, for example, who received a kidney from her cousin, expressed her disappointment: “I had no idea that being transplanted would be this difficult. Of course, dialysis was hard too. Nevertheless, compared to this, it was easier. I did not have the fear of losing. Waiting was endless, I admit. However, I could eat whatever I wanted, because the machine would wash it all away. Now I have to take control of my body. I cannot lose my cousin’s kidney—he is half a man now. If something happens because of my own choices, how could I live knowing it was all my fault?”

“The Transplanted” as a Claimed Identity

The transplanted is not merely a biomedical term but a socio-cultural category located between hemodialysis and the ever-present possibility of organ rejection. The term itself harbors the risk of returning to the very state from which the transplanted body once escaped—dialysis. It also reflects the medical condition of recipients whose malfunctioning kidneys have been replaced, yet whose bodies remain far from healed. Therefore, the restoration of health becomes partial, conditional, and constantly negotiated. Transplantation does not return individuals to a previous state of normality; instead, it produces an “alternative normality” in which health is contingent on laboratory results, immunosuppressants, dietary restrictions, and the fear of losing the graft. In this sense, the transplanted inhabit a sustained liminality—neither fully healthy nor unmistakably ill—where biomedical success coexists with social uncertainty, embodied vigilance, and the fragile hope of continuity. Almost all participants reacted with a kind of resentful insistence whenever I used the term “patient.” They longed to be called “the transplanted,” a category they felt more accurately captured their current identity. As Mehmet put it, “It is still better than being a hemodialysis patient lined up for the machine.” For many, the term offered a symbolic distance from the dependency, monotony, and stigma of dialysis, even if it did not entirely free them from the vulnerabilities of their condition, nor from the liminal state in which their health remained perpetually provisional. The “sense of halfness” with which many dialysis patients once identified had now been transformed into a new identity—the transplanted—marked not by completeness but by a different form of incompleteness, one tied to vigilance, uncertainty, and the fragility of the graft. However, when compared to being on dialysis, participants preferred this space: a space in which symptoms might eventually disappear, and where the things they had missed during their dialysis years now seemed, at least potentially, within reach again—eating freely, travelling, working, dating, or simply imagining a future that extended beyond the next session or the following laboratory result. Mehmet’s and Yaprak’s hopes of finding a suitable match, Necdet’s, Fahriye’s, and Akın’s expectations that their nausea would eventually subside, and İhsan’s and Akın’s joy at watching their grandchildren grow up were more than personal wishes; they were building blocks of a renewed self. These anticipations were part of an emerging transplanted identity in which individuals, still suspended in liminality, attempted to reclaim roles—such as partner, parent, grandparent, and worker—that dialysis had interrupted. In this sense, hope itself became a form of identity work, allowing the transplanted to imagine themselves not merely as patients but as subjects once again capable of inhabiting social worlds beyond illness. Sinan’s comparison of the transplanted identity to “halfness” is particularly striking. As he put it, “I still have my troubles, but thanks be to Allah. At least in this state, I can take care of myself. Before, the idea of being dependent on others for everything was unbearable. You cannot even compare the two…” His words reveal how transplantation, despite its uncertainties, offered him a form of embodied autonomy that dialysis had taken away—an identity no longer defined solely by dependency, but by a partial restoration of self-sufficiency. Another component of the transplanted identity is a paradox of being: recipients live between the anxiety of waiting for a call from the National Organ Center—or, for some, the obligation to search for a living donor—and the hope that, as Akın expressed it, “with this kidney, I might even grow old.” This tension between fear and possibility fuels a form of identity that is simultaneously shaped by vulnerability and the longing for continuity. The transplanted identity is not simply that of a hopeless patient, nor that of a healthy person without fear; it is an identity formed through the coexistence of both vulnerability and restored possibility.