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.
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.
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: