I rage for life. I want so much to be free. (Marion Woodman 1985)
Each candidate will have their own story of how they came to require organ transplantation. Common to all, is the presence of a physical condition that has caused a body organ to cease working properly. Discussion of the many illnesses that might result in transplant surgery is beyond the scope of this book. Appendix I lists several books that deal with specific illnesses such as heart disease or diabetes. Your transplant coordinator or doctors probably can suggest other books that pertain to your condition. Our discussion continues from the time that you first consider an organ transplant.
Your initiation into the world of organ transplant typically begins when a doctor first suggests that you may need to consider transplantation as a treatment option. Ideally, you would have some previous warning that transplant was a possibility. If so, you might have had a chance to search out some information on transplantation. Or maybe you have spoken to someone who has had a transplant. For example, those receiving dialysis treatment have usually heard that they may someday benefit from a kidney transplant. Knowing of this can help them to prepare themselves for referral to a transplant program.
But many will react with shock at first mention of organ transplant. This is most likely to occur when the patient has never before considered the idea of transplant. Fear and apprehension are likely to occur when either the doctor or the patient consider transplantation a last option for treatment. Referral for transplant can be a potent reminder of the severity of one's medical condition. Consequently, referral can be an important landmark in an ongoing process of adjustment to illness.
At the time of referral, your doctor will send information about you to the transplant team. But many transplant programs also insist on their own assessment before they will place your name on their waiting list for surgery. This assessment typically involves a series of interviews, physical examinations and medical tests. You may be lucky enough to live near a hospital that offers the type of transplant that you need. If so, your assessment for transplant may just require a few extra appointments. Some programs will admit you to hospital for a few days to complete their assessment. If the hospital is not near your home, you may need to travel to a transplant center for assessment. Travel, meeting new staff, and staying in a new hospital can contribute greatly to the stress of the application process.
The transplant assessment can have several goals. The tests and consultations help the team decide if your medical condition is one that can benefit from a type of transplant that they can offer. They will assess how well the target organ (e.g., heart, liver, etc.) is or is not working. Transplant surgery usually occurs at or near the point when the diseased organ ceases to work at all.
This initial assessment also ensures that the team is thoroughly familiar with your general health. They must deal with any other medical condition you may have. And they must be certain that another condition will not unduly impair the outcome of transplant surgery. A transplant team looks for a candidate who has severe disease in the organ for transplant, but who is otherwise healthy. This ideal is seldom found. The teams become expert at managing many medical conditions.
Another goal of the pre-transplant assessment is to ensure that you are aware of what you are heading into. Your transplant team will prefer that you and your family make an informed decision about transplantation. The coordinator will provide you with booklets to read. You should ask questions about anything that is not clear to you.
Sometimes, the team will offer to introduce you to other candidates or recipients. This is an excellent opportunity to find out first hand what it is like to wait for, receive and recover from transplantation. But keep in mind that you will learn only of one person's experience. Your own experience with transplant may be similar or very different from theirs.
Often, it is enjoyable to meet others with similar challenges to their health. Several candidates have told us that it was not until their assessment for transplant that they first met others with an illness similar to their own. One woman named Janet, had lived almost twenty years with an illness so rare that most doctors have never even heard of it. During her assessment for lung transplant, she met another candidate with the same condition. Janet was overjoyed. "I had never met anyone before who could really appreciate what I had been through," she said. Later, Janet described their meeting by saying that; "This must be what it is like for brothers or sisters, separated by adoption at birth, to later meet as adults do."
The pre-transplant assessment is not just a time for the team to decide if they can offer you a transplant. It is also a time for you to learn more about your condition. And for you to finalize your decision about whether you wish to pursue a transplant at this time.
The transplant team must be alert to any illness that they cannot treat or that will unduly impair the success of the transplant. The reason for this is simple. Organ transplant requires valuable and scarce resources that must be used so that the greatest possible benefit results. Few would suggest that transplantation should proceed when it is predictable that another illness will rapidly cause the graft to fail.
Besides physical conditions, problematic behavior can result in graft failure. For example, if a recipient does not take their anti-rejection drugs properly, the transplant will fail. If the team could predict this unfortunate outcome, they would try to resolve the problem early. Otherwise, they would likely defer surgery. The argument against surgery would be that the applicant would do poorly with or without transplant. If the team knows that a recipient will reject an organ, it is most judicious not to go ahead with the transplant. The reason for the rejection may not matter. The important factor is whether rejection is preventable.
A transplant team will agonize over any decision that may require them to defer necessary surgery for a patient. Their goal is to transplant people, not turn them down. But they have a responsibility to conserve scarce resources for those who can benefit. Unfortunately, the prediction of human behavior can be very inexact. Partly because of this uncertainty, some transplant programs do not apply anything other than medical criteria for the acceptance of applicants for transplant. Other teams have exclusion criteria for patients with severely problematic behavior. For example, one's use of drugs or alcohol may be out of control. If so, it is likely that a transplant team would refer this applicant for treatment before considering a transplant.
If you have an assessment before transplantation, you may have an interview with someone who asks questions about your personal life. This interviewer may be a nurse, social worker, psychologist or psychiatrist. They may also wish to interview members of your family. The purpose of this interview is to identify your individual strengths and vulnerabilities. These specialists may suggest strategies that can help you or your caregivers deal with transplantation. Usually, they are available to you from the time that you apply to a program until long after surgery. Many transplant programs offer counseling services for candidates and recipients. Their goal is to predict and deal with any personal circumstances that might have a negative influence on you or your health.
This assessment of your personal life might have one additional purpose. The team may wish to assess your personal circumstances against criteria for acceptance to their program. As we have said, some programs will require that you first receive treatment for drug or alcohol addiction before enrollment on their waiting list. A personal interview is the usual way for the team to decide if you require this or another type of help. Each transplant team differs about what, if any, personal criteria they use to decide about your acceptance to their program. This is a controversial practice that each program will approach in its own way.
As an applicant for transplant, you and your family have both rights and responsibilities when providing personal information to the program. You have a right to know beforehand, the team's criteria for enrollment. The interviewer has a responsibility to tell you the purpose of their assessment and how the team will use the information that you provide. This ensures that you are properly informed about this important part of your assessment. Your responsibility is to answer questions honestly. If you withhold relevant information about yourself, you may jeopardize your health and your working relationship with the transplant team. Only with awareness of these rights and responsibilities can a transplant team and applicant's hope to work together toward the desired outcome.
Most transplant teams will have a therapist available to treat mental health problems. Their goal is to minimize any risk to the transplant's success. But these specialists must know the patient's clinical history to ensure the proper treatment. Otherwise, you risk wasted time and poor treatment. Of course, the greatest danger is that lack of accurate information will compromise the health of the transplant candidate or recipient needlessly.
We suggest that you learn what, if any, criteria that a transplant team uses to choose candidates for surgery. Describe honestly to them, any mental health problems and treatment that you have had. Only in this way can you and the teamwork together to ensure the best possible outcome.
A sense of relief can occur when an applicant first enrolls on a transplant waiting list. Enrollment resolves any uncertainty about acceptance to a program. It is reassuring to know that you are now in the care of professionals who will do everything possible to help you regain your health. We wish that relief were the only feeling that ever occurred during this time. Everybody would be overjoyed if there were no further hurdles to overcome. But in reality, the events and personal reactions that follow enrollment on a waiting list are many.
Your previous experience with illness will influence your reaction to enrollment on a waiting list. Kidney transplant offers two examples for comparison. Someone on dialysis for several years is likely to look at transplant as a welcome opportunity for relief from the constraints of dialysis. There is usually at least mild apprehension about surgery. But for the candidate with a lengthy history of illness, their excitement over the potential outcome is often a potent antidote to any fear of surgery.
Now consider a person whose kidneys have failed slowly over several years, but who has never required dialysis. For him or her, kidney disease has been an inconvenience. But it has not intruded on their lives nearly as much as dialysis can. Compared to these circumstances, kidney transplant can seem a great intrusion and risk. It is now not uncommon for those with kidney disease to have a transplant without ever requiring dialysis. These recipients may imagine that immediate treatment by transplant is preferable to dialysis. But they will likely hold far greater ambivalence about transplant than someone who has received dialysis for years will. The prospect of transplant seems a little less exciting, a little less of a relief. A woman known to the authors offers another example.
Besides previous experience with illness, other factors can influence your attitude toward transplantation. Are you well informed about what to expect? What have others told you? Do you hold some mistaken views? Have you considered your decision fully?
The type of transplant that is proposed will affect your reaction. Very high-risk surgery will arouse greater apprehension than surgery that involves lower risk. A greater degree of apprehension may occur in those who must travel to an unfamiliar city for transplantation. Of course, different people will react differently to the same situation. We each bring our own life history, attitudes, and expectations to a new situation.
There always exists some combination of excitement and trepidation at the prospect of transplantation. A certain amount of fear is both common and normal. For some, their anticipation of benefit far outweighs any apprehension. They agree to transplant with little apparent hesitation. Others must make their decision in the face of marked ambivalence. What may seem like an obvious decision for many, can be more complicated or lead to an opposite conclusion for others.
One dialysis patient has written of his rationale for declining kidney transplant at a time when most others readily agree to the surgery. His reasons, based on intensive and insightful personal reflection, resulted from his consideration of the risks and benefits to his own life. New candidates have often asked us if others had expressed fear about transplantation. They say to us that, "Everybody looks so excited about transplant. It is like they can not wait for surgery." Although apprehension is common and normal, new candidates can sometimes feel very alone with their fear.
There is no single attitude that you must hold about transplantation. Your own reaction is as valid as the next. And don't assume that everybody else is as calm as they appear. You cannot know what somebody else is thinking or feeling without asking him or her. Once you ask, you will find that you are not alone.
The length of wait for a transplant can vary widely. Hopefully, you will only have to wait a few weeks. But for some transplants, you could wait two years or more. The type of transplant that you require and the availability of donor organs largely decide the length of wait before transplantation. Most candidates find awaiting surgery a stressful time. The longer the wait, the greater the stress.
Waiting for transplant is most challenging for those who require a vital organ transplant (e.g., lung, heart, liver). Without transplantation, these candidates expect to die. One lung transplant candidate's husband has aptly described this time as like two lives on hold. Due to serious illness, his wife was unable to enjoy much activity. They were left waiting for transplant surgery to turn things around for her. Lack of control over when the transplant would occur resulted in an uneasy sense of waiting for something to happen.
|
|
|
|
|
|
|
There is not a lot that we need to say about this event. It is what everything else has been in preparation for. Have a small bag packed to go. The team will call. You will go to the hospital. At this time, you place your confidence in the transplant team. You trust them to do their jobs well.
There is one interesting aspect of this time that we would like to point out. Until the day of surgery, the transplant team, your family and this text have all encouraged you to remain as independent as possible. They have encouraged you to be an active participant in your health care. Now, you are beginning a highly technical phase of transplantation, during which you will be largely dependent upon the staff and their tools. For the next few hours at least, there is only one good approach to take. Do as directed and allow the staff to complete their assigned tasks. Ask questions if you like. But remember that the best time for questions is before this stage. The team may be very busy for the few hours before, during and just after your surgery. This is the time they have trained for.
We have tried in our writing to avoid suggestions that are much easier said than done. But this time it is unavoidable. Let the team work while you rest. Very shortly, the doctors and nurses will be encouraging you to be more active again. Soon after surgery, they will expect you to start looking after yourself again.
I have to explain my medical history repeatedly to different staff. Can't they just read my chart?
A nurse said that my husband was in denial. What exactly does this mean?
Is it a good idea to ask other candidates and recipients what to expect?
