Transplant recipients typically display one of two attitudes about the identity of their donor: intense curiosity or disinterest. As a matter of policy, hospitals usually give recipients only minimal information about the donor–the age, sex and city or geographical region at most–but as one social worker put it, ”some patients have an uncanny way of finding out who the donor was.”
Even when the patients are not informed about the donor, Vanderbilt`s Castelnuovo-Tedesco says, ”they develop fantasies about the donor, they make up an identity for the donor. For example, I remember a patient who only knew the donor`s age and the fact that he was married. From that he concluded that this was a stable family man with children and that he had received stability and good judgment as well as an organ through the transplant.”
”All I know is that my heart was from a 34-year-old woman from Indianapolis who was killed in a car accident,” says Johnson. ”I would like to see a picture of my donor, to know more about her. I don`t imagine this lady was black, but if she was, it wouldn`t matter to me. It`s little questions like that that pop into your mind. What she was like, what kind of person she was. You feel that you should know more about her, seeing you`ve got a part of her. The heart is working so good it could only come from a good person. I don`t know how to explain it. To me, she had to be a good person to do what she did, to be a donor. I would like to think of her as a very wonderful person.”
Jim Ryan, 45, a heart recipient (September, 1983) who lives in McFarland, Wis., learned his donor`s identity after an Appleton Post-Crescent reporter tracked the distribution of the donor`s organs and the donor family agreed to reveal their identity. ”We have a very special association with my donor family,” he says. ”We either visit them three times a year or they come down here from Menasha about three times a year. They have come down for my anniversaries of transplant. My donor was a 20-year-old woman who told her family about a week or so before her accident that if anything happened to her, she wanted to be a donor. They also donated her eyes and kidneys, so four or five people benefited from her death.
”We talk about Sarah all the time. About what her likes and dislikes were. It sounds a little gruesome to people from the outside, but I think being able to talk about it has helped them quite a bit. They realize that they lost a part of their family, but with me–I don`t think they keep in touch with the other recipients–they feel it`s an extension of her life. I tried to find a way to thank them, but it`s totally impossible to say `thank you` for somebody giving up their life for you. But the least that I can do is try to stay healthy and do the best that I can to see that their sacrifice doesn`t go unrewarded.”
Willis discovered his donor`s identity after his wife figured it out from a newspaper accident report and attended the funeral. When she asked to speak to ”the father,” meaning the officiating priest, the donor`s father appeared. ”Three weeks later, she told me,” recalls Willis. ”His parents said they wanted to see me, and I had dinner with them. (My donor) was a lot younger than me. I was 34, and he was 22. He was killed on a bicycle. Two bicycles ran together on a path, and he hit his head. He was an athlete, and he rode a bicycle almost every day, anywhere from 30 to 40 miles a day. He was real active and healthy. His name was Les. He was a real good guy.”
Other recipients shy away from contact with the donor family, fearing that expectations of a closer relationship might be imposed. Though it has worked out fine for some people, health professionals discourage it, too.
”We give the donor family a follow-up on what happened with the organs, but we don`t give them the (recipients`) names in case they might start feeling a little bit possessive about a total stranger,” says Dr. Martin Mozes, chief of transplant patient surgery at the University of Illinois Medical Center. ”On the other side, the recipient or his family might feel that they owe the donor family something when, in fact, they don`t directly because it`s not a personal type of donation.”
Even if transplant recipients know only their donor`s age, many personalize the exchange in some manner. Peters, an avid cyclist and cross-country skier who received a child`s heart, is fond of saying: ”I have a 12- year-old heart, so I`m just a little kid on the block. I have lots of energy. Everyone`s gotta keep up with me. People ask me, `Will you live longer if you have a 12-year-old heart?` and I say, `I`m not quite so sure, but I hope so.` ”
Jill Terreberry, 33, a liver recipient (January, 1985) from Schaumburg, says: ”A year after my transplant my surgeon told me that I had the liver of a 15-year-old male from Tampa, Fla. I always think of my donor. He didn`t live very long to enjoy life. I went through a bout of rejection, and I told my surgeons that since my liver is 15 years old, he must be going through puberty or something. But you know, they don`t have a sense of humor!”
For many recipients, curiosity about the donor fades into the background as they struggle to adjust to life after transplant. Mood swings are common during the first year and even beyond. Patients can feel very depressed and very euphoric from minute to minute, especially when dosages of antirejection medication are at the highest levels. It is unclear whether these problems are drug-induced, psychological or a combination of both. ”At first I couldn`t understand where the depression was coming from,” says Reems. ”That makes you more depressed because you should be happy to be alive. Then my wife would feel guilty because she blamed herself. Now she understands that she has nothing to do with it, and she says, `I`ll just leave you alone for a day or two,` and it goes away.”
More hospitals are organizing support groups for transplant patients and their families to ease them through an ordeal that can strain marriages and shatter friendships. Reems has gone further. He founded TRIO (Transplant Recipients International Organization) in an effort to aid fellow transplant recipients with their adjustment, to spur organ donation and to lobby for their overriding practical concerns: the triad of finances, insurance coverage and employment.
”It is always very helpful to talk to someone who has been through it,” Reems says. ”One day during a clinic visit, I met another gentleman who had had a transplant, and he asked me, `Do your hands shake?` I said, `Yes, that`s because of the medication,` and it was like a big weight had been lifted from his shoulders. He thought he might be in rejection. I`m working to train recipients so that we can talk to people who have just had a transplant and to those who are waiting because I know there are so many concerns and fears.
”I try to alert them to the fact that other people, the family especially, are going to be very squeamish about them being around at first. You go to pick something up, and next thing you know somebody else`s hand is ahead of yours and it`s, `Let me get that.` Or people asking you how you are every five minutes or saying, `Are you sure you should be doing that?` Sounds small, but after a while it`s extremely frustrating.”
Sometimes transplants can cause friction in a marriage, says Donna Rinaldo, clinical social worker for the liver transplant program at Pittsburgh`s Presbyterian-University Hospital. ”For example, in the case of a male patient who is ill for a long period of time, the wife, who was sheltered through her life in the marriage, suddenly has to take on more responsibilities, might have to go out and find a job. She might find that she likes the independence and feelings of worth. When the husband gets better and is ready to take on those roles again, she might not want to give them up.”
Families and friends aren`t the only ones who feel uncomfortable about transplantees. Employers often are reluctant to hire them. Older men and blue- collar workers fare the worst. ”It`s a real problem,” says U. of C.`s Stuart. ”I am frequently writing strong letters on behalf of patients to their employers. It`s tough for a patient who gets an organ transplant, gets rehabilitated and then tries to get back in the job market cold turkey. He`s lucky if he has an employer who will take him back.”
Many companies encourage employees who have had any kind of heart surgery, not only a transplant, to retire early, or they simply don`t rehire them, considering them medically uninsurable. ”They`re trying to protect their interests, but it`s a very selfish way,” says Dr. Roque Pifarre, surgical director of the heart transplant program at Loyola University Medical Center. ”The majority of these people function very normally. We have two who are policemen, and they`re back at work.”
The federally commissioned National Heart Transplant Study, conducted by the Battelle Human Affairs Research Centers, found that 31.6 percent of living heart transplant patients were employed either full-time or part-time. Heart transplant recipients were much less likely to be working than were coronary artery bypass, dialysis or kidney transplant patients, according to the study. A University of Arizona Medical Center study indicated that quite a few heart transplant patients, labeled ”insurance disabled” and ranging in age from 26 to 43 years, wished they could return to work, but they could not risk losing their disability income and government-subsidized health care benefits. Half of them were working ”under the table” to supplement their disability payments without reporting the income.
The financial strain is tremendous. The extent of insurance coverage for transplants varies widely. Some plans offer coverage of heart transplants through a rider to basic plans, but liver, pancreas and heart-lung transplants are covered more rarely. Medicare covers kidney dialysis and kidney transplants under a 1972 law, but it only covers heart transplants for patients who have been disabled for at least two years or for those aged 18 and younger whose parents are covered by Medicare, and it covers liver transplants only for children with congenital liver disease.
In the meantime, the cost of transplants remains steep. On the average, kidney transplants cost $30,000 to $40,000. But heart transplants can cost between $57,000 and $110,000, while liver transplants range from $68,000 to $238,000. Complications and retransplants, particularly in the case of livers, can add thousands of dollars to the bills. Even the most liberal insurance policies impose a lifetime maximum coverage of $500,000. Just to procure an organ from a donor costs about $8,000, at the very least. Consequently, many patients must resort to the humbling experience of holding benefits to raise money for their surgery, and they`re still paying for their organs years later.
After surgery the cost of the essential anti-rejection drug cyclosporine alone may run $6,000 a year. And it`s not uncommon for some transplant recipients to risk medical complications by cheating on their medication in an effort to save money.
”My wife`s in the Army at Ft. Hood, and I`m kind of Mr. Mom to our son and daughter now,” says Willis, who returned to cross-country trucking for six months after his transplant, then dropped out. ”The reason she`s in the military is because of the drugs. It`s kind of hard for me to pay out $125 a week for drugs. Now the Army pays for it.”
Johnson, who was divorced after her transplant, says financial problems were a contributing factor. ”Our insurance company dumped us the day after I got my new heart. Having $200,000-and-some worth of bills piled up was hard for either one of us to take.”
Some transplantees are advised by their doctors not to return to work because their suppressed immune systems leave them extremely vulnerable to life-threatening infections. They`re more susceptible to infectious diseases and funguses that are rarely harmful to normal people. Though they`re not invalids, their horizons are narrowed considerably.
”I`m on a disability leave from Motorola, where I was an order correspondent,” says Terreberry. ”I gave up my apartment because I couldn`t afford it, and I`m home 24 hours a day with my mother. I don`t own a car. I don`t go to the shopping malls. I don`t go to movie theaters. My friends come over individually or in pairs, and if they have colds, they stay away. I do lots of cross-stitch and needlepoint work, and that keeps me busy. In the spring and summer, flowers! Maybe the liver had something to do with horticulture or something, but I`ve found this new thing, planting flowers and taking care of shrubbery. It`s a different kind of lifestyle, but I have a very loving family and I`m pleased that I`m here instead of six feet under.” For those who return to their jobs, coping with the curiosity or fear of colleagues often proves more trying than readjusting to the work routine.
”I went back to the same job (as an electrical engineer) I left and have been able to perform it without any difficulty,” says Bill Blanford, 47, a liver recipient (March, 1985) who lives in Oak Park. ”I use caution. I ride the `L` to work, and if somebody is coughing or sneezing around me I move to a different seat if I can. I told people in my office in advance that if they had colds or flu I was going to avoid them. It has been successful. The only cold I had I caught during a long car trip with my wife and daughters, who had colds. It lasted longer than colds I had had before–about 10 days.
”People I only see every few months will inevitably ask me questions which say, `Are you still okay?` The first thing they think of when they see me is `liver transplant,` and also they will immediately think, `Is it still working?` What I usually do if somebody says, `How are you?` is say, `Fine, how are you?` and switch the emphasis to them and try to turn the conversation to something else.
”Unless someone saw my scar or saw me taking cyclosporine from the funny little brown bottle, they would not know that I was transplanted. I will not consciously talk about it when there`s no reason to talk about it. It`s nice just to be a normal person and blend into society.”
While quality of life remains an imprecisely defined concept, Stanford University cardiovascular nurse educator Mary Lough conducted the first study of heart transplant patients` own assessments of their post-transplant lives. Of the 75 participating recipients (questionnaires were mailed to 100) who had survived at least six months post-transplant, 89 percent rated their quality of life as good to excellent, and 82 percent said they had high life satisfaction, despite medical and financial problems. Those recipients who were employed reported a higher quality of life than those who were homemakers, students, retired or on medical disability, but employment had no effect on life satisfaction.
Asked to name the three factors that make life most meaningful for them, 61 percent selected family as their first choice, and 38 percent listed family as their second choice. ”It was really quite remarkable how stable the families were,” says Lough. ”Of course, the other thing is that transplant centers select recipients who have a strong family background and social support system.”
In the long-term recipients, the most frequent medical complications were osteoporosis, vision disorders, back or spine disorders and cancer. Among the other side effects, changes in physical appearance, such as the puffy ”moon face,” excessive hair growth and weight gain bothered women and younger recipients the most, while impotence was a major concern of men. ”There is a problem with impotence for up to 37 percent of the men,” says Lough. ”It can be due to either the high-blood-pressure medication they take or possibly the other immunosuppressive drugs.”
In the National Heart Transplant Study, both recipients and their attending physicians were asked, independently, to evaluate the recipients`
health status. Two-thirds of the recipients were rated by their doctors as normal, without evidence of disease, while only one-third of the recipients rated themselves as having normal health status. ”In all studies,” notes Lough, ”recipients view the transplant lifestyle as superior to end-stage heart disease and certain death.”
Life is precious to transplant recipients, a uniformly courageous lot, and, more often than not, it`s pared down to the basics. Their perspectives and priorities have been reordered to focus on family and community–and to take nothing, certainly not tomorrow, for granted. ”I find myself living so I appreciate every day,” says Blanford. ”A lot of people talk about that or feel they`d like to live that way, but I`m one of the few people who can seriously appreciate what that means. I just don`t think about how long it`s going to be.”
Knowing now what they do, nearly all transplant recipients (95 percent in the Stanford study) say that they would make exactly the same choice, despite the problems.
For Jim Szyplik of Lombard, it isn`t a hypothetical question. ”I got my first kidney in early 1982, and it rejected in the first three weeks,” says Szyplik, 45. ”It was disappointing and depressing. I had to go back on dialysis. You experience a tremendous attitude change on dialysis. You can be jovial in the morning, and you can come back from lunch and feel depressed or angry at people for no reason. It took me about a year to mentally get ready to go on Rush-Presbyterian-St. Luke`s waiting list for the second kidney. But if this one were to fail, I would go back on the list again. To me, the freedom is worth it.”
But in the last analysis, quality-of-life issues may never be resolved until doctors find better ways of controlling the immune system and helping their patients cope psychologically. For now, what constitutes an acceptable quality of life for one person may be too heavy a burden for another. And those transplant recipients who have fared the worst, those who chose slow suicide by stopping medications, aren`t here to testify.
