Real People

 Kidney Transplantation: Past, Present, and Future

 Drs. Stuart Greenstein and Bonita Siegal are conducting a huge multi-center study of transplant patients' taking of their medications, compliance with lab tests, etc. The study involves 3,000 patients from some 72 transplant centers around the country.

 What follows is a portion of Dr. Siegal's thesis, based on a smaller previous study of the same topic.

Post-Renal Transplant Compliance: The Cognitions, Emotions, and Coping Behaviors

 by Bonita R. Siegal, Ph.D.*


Statement of Research Problem

 The first organ to be transplanted from one human to another was the kidney. The earliest renal transplants were between identical twins. Because they share the same genetic make-up, there was no danger of the recipient's body rejecting the transplanted organ as foreign. In all other combinations of donors and recipients of transplanted organs, however, it was and remains necessary to suppress the recipient's immune system with medication, and to continue this medication indefinitely.

 As immunosuppression drugs were developed, it became possible to transplant kidneys, first between family members sharing some genetic material, and later from cadaver donors to completely unrelated recipients. In what is now called the "Prehistoric Era" by many transplant professionals, the first generation of these drugs assaulted the whole immune system with the frequent consequence of recipient death from viral, fungal or bacterial infection that the recipients' bodies could have fought off fairly easily in normal circumstances. The patient mortality rate during this period was about one third. The death rate dropped dramatically and the renal graft survival rate increased tremendously with the introduction of the second generation of immunosuppressive drugs. Over the years, immunosuppressive drug therapy has been refined to a point where it is potentially available to most patients with end stage renal disease, and many thousands of them now have a functioning transplant. With this success has come a n problem, however - loss of the transplanted organ through noncompliance with the immune suppression regimen.

 Post renal transplant noncompliance is currently the third leading cause of renal graft loss with chronic rejection the primary cause (Didlake et al, 1988). Chronic rejection is believed to be frequently secondary to multiple noncompliance episodes when innate immune system responsiveness is reactivated by the recipient's noncompliant behavior (Didlake et al, 1988). Understanding post renal transplant noncompliance is one of the leading topics of speculation in renal transplantation. Most of the relevant debates, discussions, and research studies focus on what demographic characteristics identify noncompliant patients (Rovelli et al, 1989A) (Kalil et al, 1992). In these studies, compliance is an outcome variable. None of the studies examine the compliance process, which is how patients think, feel, and act regarding their transplanted kidney.

 This study was designed to provide specific data on the renal transplant recipient's cognitions, emotions and behaviors following a transplant. To understand the renal transplant compliance process, multiple factors must be reviewed. These include inquiry into the relationship between the individual and his/her body, and the person-in-the-situation. The literature provides some information on these variables and forms the basis for the hypotheses.

Dialysis and Renal Transplantation: The Patient's Perceptions

 Chronic renal failure is the culmination of a progressive disease process and is the destruction of an organ system necessary for life (CNSW, 1990). The person with chronic renal failure will never regain his/her kidney function and will never be cured. If renal replacement therapy is not received, death will occur within a short time. Renal replacement therapy is designed to remove excess water and metabolic wastes and has two primary modalities: dialysis and renal transplantation (CNSW, 1990). Dialysis is the cleansing of the body fluids by the diffusion of the extra water and the waste products, through either the blood or the peritoneal membrane. Hemodialysis requires that the patient be connected to a dialysis machine three times per week for three to four hours each time. Peritoneal dialysis requires that fluid be placed into, and removed from, the abdominal cavity three to four times per day. Both of these treatment modalities sustain life, but the patient's quality of life is not comparable to beingealthy. Renal transplantation also removes the wastes and excess water, but the patient perceives his/her quality of life to be better than it was on maintenance dialysis.

 Renal transplantation is the transfer of a kidney from either a living donor or a cadaver donor into the recipient's body (Greenstein, 1993). The transplanted kidney's renal artery is attached to the patient's iliac artery, the renal vein is sutured to the iliac vein, and the ureter from the renal graft is tunneled into the bladder. The surgery is very simple, but how renal transplantation is experienced by the patient is a very complex combination of positives and negatives which vary according to life cycle stage, education level and socio-economic status. Therefore, it is impossible to tell the potential recipient what life will be like after the kidney transplant.

 Nothing that happens post renal transplant is clear cut. All the benefits come with related costs. The recipient as a totality is affected by the kidney transplant, as well as the recipient's primary social groups of family, peers and work place colleagues (Bloom, 1990). The recipient and the recipient's primary groups react both positively, and negatively, to the renal transplant. These reactions will be discussed in some detail and are based on a distillation of the author's clinical experience with renal transplantation.


 After receiving a kidney, the recipient's body has a surgical scar in either the right or the left groin, the site of the renal graft implantation. The location of this scar on either the left side or the right side depends on many factors. Did the recipient get a right, or a left, kidney? Was the transplant surgeon left or right handed? Had the recipient been transplanted previously? The scar on the patient's body symbolizes a major change. The recipient is now able to produce urine again. The "new" kidney does not recognize that it is in another individual's body, but it does "know" that there are metabolic wastes and excessive water to be excreted; therefore, it is not unusual for the recipient to excrete several liters of urine per day in the first few days post transplant. The new kidney is working to bring the recipient's body back into the normal homeostatic balance for its electrolytes, minerals and fluids.

 This biological miracle is offset by the innate ability of the patient's immune system to recognize protein which is foreign to the recipient's body. The new kidney is foreign protein. During the renal transplant surgery, when the clamp on the renal vein is released, the immune system becomes aware of the new kidney. It is possible, but not probable, that this alerting of the immune system turns into a massive immune system response called "hyperacute rejection". If this occurs, the new kidney immediately turns black and dies before the surgeon's eyes (Greenstein, 1993). The patient wakes up to learn that the new kidney has been lost already.

 Prior to receiving the renal transplant, the potential recipient is informed that the immune system tries to destroy the transplanted kidney, but the actual implications of this are not fully understood until after the transplant. Then the recipient must adapt to living with the unrelenting risk of the renal graft's loss. This risk is the highest in the first year post transplant. After that the risk decreases, but it never disappears.

 To control the immune system's response to the newly transplanted kidney, it is necessary for the recipient to take immune suppression drugs which are usually cyclosporine, imuran and prednisone, the latter of which is a steroid. These medications have the benefit of protecting the kidney, but they also have many side effects which impact the recipient's whole life. One is weight gain--usually about 20 pounds (Greenstein, 1993), and the second is change in body shape. The most common contour change is fat facial cheeks. In fact, fellow transplant recipients call a newly transplanted person a "Chipmunk". These negatives are partially offset by the feeling of well being which comes with recovery from uremia and not having to be dialyzed on a rigid schedule.


 As the body changes, the minds of recipients mind are also modified. Their cognitions become clearer, and they have new emotional issues to address. The improved cognitions are secondary to the absence of uremia. Whereas prior to the renal transplant cognitions were impaired, it is now possible to think clearly. It is difficult, however, to concentrate for long periods. This is very frustrating for many recipients. They do adapt over time as ways to improve their concentration are learned, and as the steroid dose is decreased.

 The emotional state of recipients is also affected by the transplant. They do feel physically better and report feeling happier, but this pleasure is mixed with sadness over the body changes and the irritability which comes with high steroid doses. Many transplant recipients feel guilty because they profited from someone else's loss. If the recipient received a living donor kidney, then someone close to them underwent major and very painful surgery. If the recipient received a cadaver donor kidney, then some other family had a loved one declared brain dead and was altruistic enough to donate the organs. Each of these transplant situations involves someone experiencing loss in order that another benefits. Some recipients wonder if they would be altruistic enough to give up a part of their body or to give up body parts of a loved one.


 Along with the body and mental changes secondary to the renal transplant, behavioral changes occur. One of the most sought after and the most dramatic is an improvement in sexual functioning. The libido and sexual performance normalizes for both women and men, because their bodies are no longer uremic. This persists as long as the medications used to treat high blood pressure do not have a negative impact. After a renal transplant the recipient can develop, or continue to have, high blood pressure. The high blood pressure can be a disease entity itself, or it can be a side effect of cyclosporine, one of the immune suppressive medications. This hypertension must be controlled, because if it is not the renal transplant could be destroyed. The blood pressure control drugs can be changed or adjusted, but many times the required high doses can lead to a decreased sexual response. Many transplant recipients do not have spontaneous sex lives. Instead their sexuality is run by appointment, because the hypertension dication must be withdrawn for a few hours in order for the sexual response to normalize.

 The renal transplant recipient not following exactly the blood pressure medication regimen is one example of how recipients balance their lives against the demands of the post transplant medications. When a recipient receives a kidney, the dialysis equipment disappears, but in its place appear many bottles of medication. The average number of post transplant medications prescribed is nine (Greenstein, 1993). Some are intended to control the immune system's response to the foreign kidney, but most are used to control the side effects of the immune suppression medications or the physical symptoms of the underlying disease that caused the renal failure. For example, weak muscles are a side effect of the steroids, but a post transplant stroke can usually be traced to renal failure caused by hypertension.

 All of these medications have their own specific dosages and administration schedules. It is not possible to take all the medications at a single time. Instead, they are spread throughout the day and require that daily routines of living be frequently interrupted. These medications are very expensive, with the usual cost being several thousand dollars a year. Some transplant recipients perceive their high medication costs to be similar to having to pay a child's college tuition. Health care insurance coverage for prescription medications is a necessity. Some centers will not transplant an individual unless he/she has insurance coverage for the medications, or it is obvious that the person can self pay.

 No formal policy exists on the transplantation of the uninsured. The informal procedure is that these individuals are told to return for their pre-transplant assessment when they have insurance. An alternative procedure is that the medical portion of the evaluation is never completed--it is ignored. Written policies and procedures regarding the uninsured have never been drafted because they could become the basis of a discrimination law suit.

 After the transplant, the recipient's appetite increases, physical endurance improves, and a better sleep cycle is achieved. All of these consequences are secondary to the absence of uremia. Additionally, the appetite increase is further stimulated by the steroid medication and becomes a state of ravenous hunger. This is the primary cause of large post transplant weight gains, which can be as high as 100 pounds.

Family Interactions:

 The foregoing describes some of the body, mind and behavioral changes experienced by the renal transplant recipient. In addition, how the recipient interacts with others is altered. These changes occur in the recipient's family system or in whatever other social system surrounding the renal transplant recipient. Most large transplant centers perceive that the post transplant changes contribute to one or two divorces a year for every 100 patients transplanted. As a result of the renal transplant, recipients have more time to spend with their significant others and those closest to them. They no longer have to do peritoneal dialysis exchanges or spend 12 hours a week at the hemodialysis center. This additional free time alters the interaction patterns which may have been in place for several years. Some families are able to adapt to this, some are not. The recipient is also frequently irritable because of the steroids. This irritability, and the increased interaction time, can put a serious strain on the fami's bonds. Some families learn to make positive use of this extra time together, and to set limits on the recipient's irritable behavior patterns.

 Within the family, the adult subsystem changes in regard to sexuality and parenting. Roles have to be renegotiated and change accepted. The children of a transplant recipient are happy that their ill parent is now "better", but they are frequently appropriately fearful that something will happen to the kidney and that their parent will be sick again. This is similar to how the extended family usually responds to the transplant recipient. They are glad, because they inaccurately perceive the recipient to be cured, but they are also fearful that the recipient is fragile. The extended family frequently has difficulty accepting that the renal transplant is just another treatment modality for renal failure - it is not a cure.

 Unique in the recipient's relationships is the interaction between the recipient and the living donor. The recipient and the living donor perceive they have been emotionally bonded. Sometimes this results in a very special intimate relationship, but many times the relationship between the recipient and the donor can become strained. In this situation, the donor is more powerful and tries to manipulate or exploit the recipient. It is also possible that through a sense of indebtedness the recipient acquiesces to the donor and caters to this person above all others--even the recipient's spouse or significant other. When a living donor kidney is rejected, then both the recipient and the donor experience guilt--"The kidney I gave was not good enough", or "I was not good enough to keep the kidney". In the case of cadaver transplantation, the recipient does not have an ongoing contact with the kidney's donor family.

Peer Group Interactions:

 The recipient's peer group relationships also change. They are very similar to the extended family's responses to the kidney. Peers are happy for the recipient's increased health and may inaccurately perceive their friend to be "cured". Yet they are also fearful that the transplant situation is fragile and that the recipient will be permanently changed physically or mentally from receiving a kidney from another individual. These myths range from a belief that a man who receives a woman's kidney becomes feminized, to the belief that the donor's personality traits take over and dominate the recipient.

Colleague Interactions:

 The work group is a form of peer group so the issues of the peer groups are also present. There are some additional concerns. If the transplant patient was working prior to the transplant, the work group wonders if the recipient will be able to fulfill the job responsibilities when it is time to return to the work place. Some work groups can become very angry if the transplant recipient is unable to certain tasks or responsibilities. Additionally, many employers do not want to hire, or to continue to employ transplant recipients because they have higher than average health care costs and are at risk for catastrophic medical expenses. At this time, the Americans with Disabilities Act (ADA) appears to have had little impact on the vocational rehabilitation of transplant recipients. Presently, there are no outcome studies of the ADA, but information is circulating through nephrology social work networks that the ADA is not changing the hiring patterns of American business. This is attributed to employers' fea that health care coverage costs will further increase if renal transplant recipients are employed.


 The following hypotheses for this study are based on self regulation theoretical concepts, family cohesiveness, the patient's perception of health care and levels of compliance behavior:

  • Patients with fewer physical symptoms are likely to have a lower level of compliance.
  • Patients with negative illness memories are likely to have a higher level of compliance.
  • When the illness cognitions encompass the patient's perception that it is possible to control the disease with coping behaviors, then the patient is more likely to have a higher level of compliance.
  • Those coping behaviors that control both the physical symptoms and the emotions aroused by the illness result in a higher level of compliance.
  • Patients positively appraising their ability to cope with the physicalsymptoms and the emotions aroused by the illness are more likely to be compliant.
  • Patients are more likely to have a lower level of compliance behavior when their emotional response to illness is a high degree of anxiety or denial.
  • The cohesiveness of the patient's family or social support is positively associated with the level of compliance.
  • The patient's positive perception of their health care is positively associated with the level of compliance.


 The study was designed to examine the post transplant compliance process. Information on how patients comply with their post renal transplant medical regimen is very useful since it allows the development of a profile of post renal transplant compliance and noncompliance behavior and patient identification. It is possible therefore to more accurately assess and to intervene with post renal transplant patients. This information should be useful to all transplant professionals. It is also possible that this information may be applicable in other health care settings.

 Clinical experience indicates that those individuals who make the purposeful decision to stop immune suppression are a small subgroup of the transplant recipient population. This utmost extreme of non-compliance, resulting in return to maintenance dialysis, will therefore not be studied. This group appears to have different values and issues from the more typical transplant recipient. For this reason, a separate study of blatant noncompliance is necessary to address this group appropriately. It is known that these individuals are labeled as blatantly noncompliant by their respective transplant service. This labeling process is highly value based and biased. It may be possible that a very different process is at work in this situation.

 The reason for choosing the compliers over the noncompliers is based on practical issues. Compliant renal transplant patients are in contact with the transplant services. The blatant noncompliers (ten percent of the population) have lost their renal grafts and have resumed maintenance dialysis, which is provided by community level health care institutions spread over a wide geographical area. Studying the noncompliers would require elaborate sample recruitment of individuals who have lost their renal grafts secondary to blatant noncompliance. Additionally, the respondents in this study's sample were actually experiencing the post renal transplant compliance process. Individuals actually experiencing the compliance process are assumed to be able to provide better self report data than the individuals giving data based on recall.

 Relevance to Social Work

 Pincus and Minahan specified that social work is concerned with the interaction between people and their environment (1983). This person in the environment fit is expanded on by Bloom (1990), who discussed how this interaction can be viewed. The social work perspective of person/environment fit can be discussed from the following viewpoints: within the person, the interface of the individual and the primary groups, and from the surrounding groups (Bloom, 1990). This study examines the person-environment fit from within the person.

 Saleebey (1992) discussed how the concept of the body has been ignored by science, professions and institutions. The thrust of his article was to show or demonstrate how the individual on psychotropic medications perceives the body's response to these powerful medications and that these positive and negative responses are not given sufficient credence by the mental health professionals. The point that an individual's social life is a result of the individual's physical well being is important. If an individual's body is not functioning well then it is most difficult for the individual to function well socially. Saleebey's article discussed how social work ignores the body and how this avoidance compromises the quality of both theory and practice. The reason for this was ascribed to social work's aversion to the medical model which denigrates the knowledge and experience of the patient.

 Saleebey asserts that increased social work awareness of the body does not mean capitulation to the medical model. Instead, he proposed a biological model that assumes that the person's body is the individual's fate and that how the body is understood or imagined has everything to do with life's chances. An additional point is made that the goodness of fit of ecological theory relies on the most fundamental sense of embodiment.

 This present study addressed the recipient's body in a most basic way. For the first time information is gathered on how the individual perceives his/her body after receiving a renal transplant. What the patient knows and what the patient has experienced in this process is not understood by either the social work profession or other helping profession.

Theoretical Perspective Applied

 The primary theoretical base for this research is Self Regulation Theory, which describes an adaptive system matching coping resources and coping responses. In addition, two other environmental concepts impact on the adherence process. These are the doctor-patient interaction (Inui and Carter, 1985) and social sanctioning (Zola, 1973).

Self Regulation Theory

 Self Regulation Theory proposes that the patient actively constructs a definition or representation of the illness (or stress) episode and bases or regulates behavior in terms of this representation (Leventhal et al, 1984). The propositions elaborate on this statement. This theory is based on quantitative and qualitative observations which reflect the patient's behavior patterns. The underlying system is composed of a series of stages for guiding adaptive action. The first stage is representation and is specified as the reception and interpretation of information for the definition of potential or actual health threat. The second stage is action planning or coping which involves the assembly, selection, sequencing and performance of response alternatives. The third stage is appraisal or monitoring which is the standard setting for evaluating coping and comparing one's coping efforts against these standards.

 The representation concept includes symptoms and beliefs. Symptoms actually precede the illness representation and are responded to by the patient. This reaction can be highly variable. At times, trivial symptoms are acted upon while serious symptoms are ignored. This variable response is affected by culture and subgroup. Sick role attitudes differ among social/cultural groups and lead to different illness reporting rates (Mechanic, 1978). Symptom perception is influenced by several factors including the symptom's frequency, its familiarity, the predicted illness outcome, the illness's threat, and the illness's potential losses (Baker and Cassata, 1983). Only symptoms appear to stimulate illness thoughts. If a symptom is interpreted as a definite illness sign, then diagnosis and treatment are sought (Leventhal et al, 1984).

 The illness representation (Leventhal et al, 1984) consists of beliefs about the cause; duration expectations-i.e., acute, cyclic or chronic; the illness's consequences; and the illness's susceptibility to treatment. These beliefs also affect treatment and compliance.

 The second major concept in self regulation is coping. Symptoms impact coping as well as the illness representation (Nerenez et al, 1982). Chronically ill patients work to reduce symptoms, the absence of which then becomes a sign to continue preventive action. The reasons for this conversion are not understood. If the patient does convert, then a long term active coping pattern develops. Coping is compliance (Scherwitz and Leventhal, 1978), and refers to the overlap between a patient's self selected regulatory behavior pattern and the prescribed treatment. Coping does not equal compliance with the prescribed treatment alone; it is a product of the patient's health threat representation, coping resources, and evaluation criteria for examining the success of specific behaviors and the strategies used to determine success or failure (Scherwitz and Leventhal, 1978).

 Appraisal, the third major component of self regulation, determines if the patient persists or stops being compliant. Appraisal is activated when coping does not meet expected outcomes (Scherwitz and Leventhal, 1978). Discrepancies, which exist between the abstract and the concrete problem definition and between abstract and concrete self perception, cause this poor outcome. These discrepancies lead to new coping behavior. Further coping behavior failure causes decreased self worth and value destruction. This is self differentiation applied to appraisal (Nerenez and Leventhal, 1983). At the highest abstract level is self worth. The next level is values which define the areas for self worth. They usually are warmth, lovingness, commitment to ideals, and family integrity. These values control the definition of the relationship between the self and the illness, which range from total to encapsulated to at risk.

 The middle layer between abstract and concrete is the strategies for relating one's self to specific problem situations. Strategies are the well-learned behavior sets or readiness for relating self to moment-by-moment problem solving. They are important during crises or positive feedback situations. This layer is not well understood.

 Beneath the middle level is the concrete level which is the interaction between appraisal and coping. It includes the attribution of outcome expectations to specific factors and the influence of outcomes on the self system. Success and failure are affirmed or denied by coping adequacy, representation adequacy and the reasonableness of appraisal criteria. These appraisal criteria are the adequacy of self worth, self competence perceptions, and the value and competency of individuals in the social, medical and institutional support network.

Patient Provider Interaction

 In addition to the self regulation process, it is theorized that the patient-provider relationship has an impact on the compliance process (Leventhal, 1985). In this social situation, the patient and the health care provider interact and as a consequence of this interaction the patient's adherence process is affected. The critical factor appears to be how the patient perceives the health care provider and the quality of the health care provided (Inui and Carter, 1985).

Family or Social Network

 Along with self regulation and the patient-provider relationship, the family or social network has a role in sanctioning the patient's response to physical symptoms and to seeking health care (Zola, 1973). When the family or social support ties are weak, then it appears the patient does not respond appropriately to the physical symptoms or seek health care at the appropriate time. The degree of cohesion within the family or the social network appears to be very important (Fehr and Perlman, 1985).

Compliance Behavior Continuum

 For the purposes of this study, it is assumed there is a continuum of compliance behavior which ranges from the perfect ideal, through the compliance behavior displayed by most renal transplant patients, to those individuals whose behavior can be labeled as blatant ignoring of the prescribed medical treatment regimen. Clinical experience indicates that there is a relationship between the amount of time since the renal transplant and the degree of compliance observed (Wilson, 1991). It appears the bulk or greatest amount of noncompliant behavior occurs closer to the time of the renal transplant. Individuals with long functioning renal transplants manifest sufficient compliance behavior to keep the renal graft functioning. These behaviors may not be the ideal, but they are sufficient. Earlier in the renal transplant process the compliance behavior may or may not be sufficient to keep the renal transplant functioning long term.

 Research supported by a grant from the New Jersey Chapter of the National Kidney Foundation.

 Copyright 1995 Bonita R. Siegal. All rights reserved.

 Posted on TransWeb by permission of the author.

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