On the platform at a conference in San Diego, two women sat next to each other. One was American, the mother of two-year-old boy recently rescued from almost certain death by a heart transplant. The other was Mexican, the mother of a two-year-old boy who had died. It was his heart that had saved the other boy's life. Both women were on the verge of tears.
The American family had lived through a long nightmare, their only child moving, inexorably it seemed, toward death. "I was afraid to hold him even when it was time to say good-bye. He looked so gray and limp," the mother told a weeping audience of two hundred nurses.
As the end approached, the other little boy was found barely alive, face down in a pool of water in Mexicali. His name was Martin, and he had been born in the United States of Mexican parents. The medical community in San Diego moved heaven and earth to bring him to a hospital there and, when permission was given, sent an ambulance for him. It was in vain. The round-cheeked cherubic-looking boy died.
Brokenhearted, exhausted by their efforts, emotionally drained, his parents nevertheless agreed to donate his organs. Why? I asked his mother. "She was brought up to try to help others," a relative who was interpreting for her said simply and unselfconsciously. It was palpably true. Now they sat on the platform, one mother still stunned by her loss, the other saved but awed that she should have gained so much from another's tragedy. "I'll spend my life trying to thank her," she said.
Everywhere we go these days, we come across that kind of knife edge of death and salvation.
In a tiny village in the north of Italy on a rain-soaked Sunday afternoon, I was asked to lead a discussion of donor families. I agreed with a sinking heart: group therapy is foreign to my nature. I'm as unfitted to give advice as I am to take it. In similar sessions I've found myself in over the years I haven't felt better at the end, and I doubt I've told anyone else anything they haven't already worked out for themselves.
In this case, there were about thirty of us, from a dozen families. It was as bad as I'd feared, two or three who wanted to talk, most of the rest sitting in gloomy silence. One young woman, who had lost her husband, struggled through sobs to weigh the good results of donating against the crushing loss. Who better than the rest of us there to commend her, but who better than we to know the futility of saying so?
Almost none of them knew who their recipients were: I couldn't tell if they were resigned or resentful or simply didn't care. But there was an air of deep dejection over the discussion.
A few days later, during an Italian television program I was on, one of the other guests, a recipient, said blithely he had no interest in knowing who his donor was. To him that was history. He felt like a new man, his business was doing well, and the illness that had nearly finished him off just a nightmare. To my mind came an image of the impassive faces of those heartsick people, the bare room, the hard chairs, and the rain beating on the windows. It seemed like a different world, but it was just the knife's other edge.
Some recipients, however, do go to extraordinary lengths to find their donor's family-researching newspapers, perhaps, to pinpoint a particular car accident on a certain night. Some then charge ahead; they can't wait to say, "Thank you-you saved my life."
Many others are shy, unwilling to do anything that might reawaken memories. So they hold off, making do with the scraps of information they've pieced together, and sometimes never do write or make that call, despite knowing with near certainty that they owe their lives to this someone who is a stranger only in name.
Similarly, many donor families choose not to meet the recipients. Some are in a sort of shock for months or years. Some don't want to do anything until they feel ready to smile again. Others are fearful, worried they won't like them, afraid they'll like them too much, frightened they may have to go through their grief all over again if the transplant fails.
Still others don't ever feel involved: they see as pure coincidence whatever it was that brought the two families together in what, strictly speaking, can't even be called an encounter. Their attitude is simple: "Let's try to put our own lives back together and let them get on with theirs."
The most dramatic meetings of donor families and recipients are on television programs when the two are brought together for the first time. It can be hokey and more like the last act of a soap opera than real life. But I can speak to the power of it also.
Before the show, the two sides are carefully segregated. Both are nervous as kittens, far more so than usual for people going on television for the first time. They sigh a lot, hold hands with relatives, gaze into space. The meetings themselves, however, are generally a love fest. The hostess gives the buildup, the donor family member on stage twists a Kleenex in her hands, the curtain parts, the recipient enters, and both parties forget the world. They hug, cry, stroke, gaze at each other adoringly.
After the show, they take innumerable pictures, show each other family photos, swap anecdotes. They are self-selected of course-they chose to go on the program-and the first enthusiasm may not last. But I've seen enough of them now to know they can be the sort of moment when the earth shakes.
Certainly, knowing Nicholas' recipients has enriched our experience far beyond anything we would have known. They are now part of our lives and we of theirs. They are still careful with us, not wanting to stir up the pain, but we always try to see them if we are anywhere near where they live and they always seem pleased to see us. It's not like being with close relatives-we don't know them that well-but they do feel like part of an extended family.
Even from the beginning, however, we never thought of Nicholas living on through them. These were now their organs and as Maggie once said, "I wished Nicholas would have lived a long time. Now I wish the same for his heart."
Dozens of people have been involved in their recovery, all the way from the removal of the organs in Messina to the after-care they still receive.
We have become friendly with some of them, including two transplant team leaders, Raffaello Cortesini and Carlo Marcelletti, who are world-class physicians.
But many more we are never likely to meet, and through this book I want to thank them too for the skills and dedication they mostly practice anonymously, but which, in this case, showed the world the astonishing power of modern medicine.
We often hear from the recipients at Christmas or Easter or perhaps they'll send a card if they travel on vacation. The messages between us are rarely long: not knowing the language is more frustrating in talking to them than it is with anyone else. It would be nice to chat freely, surprising each other with little revelations about ourselves. We'd like to tell them more about Nicholas, and I'm sure they'd eat it up, and Eleanor too, whom they've known as long as they've known us.
From time to time they give us a scare, when we hear of a setback in their health or a suggestion of a problem we hadn't heard of before. But so far, at any rate, these have been temporary upsets and, overridingly, these are people participating in life in ways impossible to them for years.
When I last saw her in Rome, Silvia, though still blighted by the after-effects of diabetes, was feeling independent enough to have moved into an apartment of her own. Domenica not only can see her daughter Laura's face clearly-no longer a baby's face-but also that of little Antonio, born to her twenty months after she got her new cornea. Mindful of how memories fade, a television interviewer asked her four years after the transplant, "Do you think of Nicholas often?" "All the time," she said in her unaffected way.
Francesco, in his mid-forties, is not only back watching rugby but playing it-as I told him, the doctors may be able to cure you, but they obviously can't make you smart. The youngest ones, Anna Maria and Tino, tiny when we saw them first, have grown and matured. Andrea, having had six operations on his own heart, all of which had failed, looks like any normal boy now that he has another boy's heart inside him. And Maria Pia, who at nineteen years old had been given up for dead, married Salvatore in the full bloom of womanhood and in the spring of 1998 had a baby-a boy, whom they have called Nicholas.
It may seem grandiose, but the scene in the Jimmy Stewart movie It's a Wonderful Life comes to mind-where, after trying to commit suicide, George Bailey is shown what life would have been like if he had never been born: his hometown corrupted and in the grip of the local miser, people dead who would have lived, his wife an old maid.
I sometimes think of transplants that way-not just lives saved, but lives that would never have been, marriages that would not have taken place, consequences flowing for generations to come. All from one simple decision.
The basic rule in this country is to allow the two sides to meet, but only if both families choose to. Yet some donor family members, who had to wrestle with a decision that racked them and distressed other members of their family, have never had so much as an unsigned letter from someone who is living today, thanks to them.
We're complex creatures and simple ingratitude probably doesn't begin to explain such lapses in civility. Vague feelings of guilt at living when another died, apprehension that the other side will make emotional demands, and, perhaps, a feeling of not measuring up to their scrutiny seem to me to be more likely. But, if nothing else, my hope would be that every recipient would somehow get a message through to make it clear that as life came out of death, it did so not just bravely, but gratefully too.
I have to add that unresponsive recipients are rare. The ones we see are usually among the most dedicated campaigners to be found anywhere, who make raising awareness of the shortage of donors their crusade and do everything from the humblest to the most influential jobs with the special energy of the reborn, speaking, organizing, checking schedules, talking to legislators, licking stamps.
Others follow their own expertise, helping disadvantaged children, perhaps, or giving away works of art they've made. They tell us, some serious, some ebullient, they are trying to "give something back." They act as though they borrowed something and can't rest until they've paid it off at an above-market rate of interest.
Perhaps the donor families who have deflected attempts to meet are missing something valuable also. At most meetings of recipients, someone will say to us, "I don't know who my donor was, but every day I say, `Thank you.' Can I say thanks to you instead?" From other recipients nearby, there is generally a murmur of approval. But it is surely a poor substitute for the real thing.
Watching the reactions of living donors who have donated an organ to someone very sick is to be convinced once and for all that to give is more blessed than to receive.
On one visit to Italy, I met a gracious count and his wife and their muscular twenty-something-year-old son, who showed a group of us around their home, a castle that has been in the family since the fifteenth century. Four years earlier, the young man had been on dialysis four hours a day, three days a week, and was weakening perceptibly until his mother gave him one of her kidneys. Now he looked strong enough to defend the family seat against any invader, and she smiled radiantly as though someone had conferred a great privilege on her.
One spring day I sat in a surgically scrubbed room in Sicily with a thirty-eight-year-old mother of four who had received a new heart six days before. "You can't touch the patient," I'd been told, but someone relented and brought in two pairs of rubber gloves. The impulse to hold hands was strong: this woman now had the heart of a twenty-year-old student from Rome, Marta Russo, whose parents donated her organs after she had been shot.
I could see in her all the mixture of emotions a transplant operation brings on: relieved beyond words that she was now not going to leave her young children, but heavily burdened by the thought of having been saved by another family's suffering, and still oppressed, as many Italians are, by Nicholas' death. She murmured her mixture of thanks and sorrow, and I held her hand tightly, feeling life through the gloves.
We were not alone, however. Looking through the window at us, television cameras and reporters were massed, and in our hands we held microphones, covered with cloth to keep up some semblance of sterility. In Sicily, where transplantation rates are among the lowest in Europe, the surgeons had wanted to lose no opportunity to publicize what donations can do and neither did I.
Later that night, it seemed to be working. On a dark street in Catania a woman stopped me to say, "I saw you on television tonight. I'm glad those parents did that." As for Marta, the prime minister attended her funeral, she was given her degree posthumously and an organ and tissue donation group has been set up in her name. I don't know how her mother and father feel about all this. But in that hospital room was the tangible proof that their decision has transformed the world for six other people.
This was not an isolated case. By 1998, donation rates in Italy had more than doubled since the year before Nicholas died. Although there are always multiple causes for changes of that magnitude, it seems clear that his example has helped save the lives of thousands of people. Dr. Starzl sent us a copy of an official Italian report on the rise of donations. "It's amazing to me to realize that what you did changed the emotional climate of an entire nation," he commented.
Letters and meetings put faces on the statistics. A woman writing from Bethesda, Maryland, said she had recently heard from her cousin, who lives in Italy. He had been waiting for a transplant since 1987. "Thanks to Nicholas Green, I finally have a new kidney and a new life," he told her. "I feel in my heart I received my lung and new life because of the publicity of your wonderful gift." A California man wrote, "I was told I should have heard the angels sing. I was that close to death." And Dr. Frederick Grover, head of Cardiothoracic Surgery at Colorado Health Sciences, commented, "We could never as an organ transplant group in this country raise enough money to publicize, in the way that you have done, the importance of organ donation."
More and more often, a shy couple will be introduced to us at meetings in Italy who say, almost inaudibly, that one of their children had talked of donating. Soon afterward there was a tragedy, generally a road accident, and the parents, sorrowfully but without doubts, followed the child's wishes. The greatest hope is with the young. Some are mature students with all the determination of youth to right the world. Others are tiny schoolchildren. They understand only that a little boy did something very good, and they want to be very good too. Not only do the young make the decision for themselves, but they often change the opinion of their parents and even grandparents.
The decision to donate does not take the pain away, however. Arriving for a talk to the city government at a small town near Rome, I was shown first into a large committee room. A dozen or so people sat there, including a young man, eighteen years old, huddled in his overcoat, hands thrust into his pockets, coat collar turned up. His eyes were focused on something far away. I recognized that shivering feeling, and my heart sank.
"This boy's parents and sister were killed in a car accident this week," someone said. "He wanted to meet you." We embraced, awkwardly, his body stiff inside the overcoat. A newspaper clipping was on the table with photographs of a laughing girl, thirteen years old, sitting proudly with her older brother and their youthful parents. The headline read: "Famiglia decimata."
On his own, as the family's sole survivor, the boy had decided to donate the organs. "They would have wanted it," he said. I stumbled through a few consoling phrases, but felt their uselessness. He will, I hope, always feel glad of his decision. But his life has been shattered and, as you read these words, he is still out there in a world emptier than he could ever have imagined.
In every country, the decision of who is to receive donated parts produces disagreements and suspicion. Should they go to the sickest? Those with the best chance of surviving? Those who have been on the waiting list longest? Most countries, including the United States, now have elaborate rules, but they are bedeviled by hairsplitting distinctions which give everybody involved a great deal of heartache.
I once attended a meeting of one of the organ donor groups which was trying to refine the priorities. Its governing board of impressively qualified men and women spent hours wrestling with meticulous definitions that, compared to the larger issues, were of minute significance, except that for some individuals on the borderline it would determine if they lived or died. It is one of those problems that would simply disappear if enough organs were available.
Hospitals in the United States are now required to inform the organ procurement groups of patient deaths, and the hope is that, along with programs to heighten awareness, donations can rise accordingly. Even minor changes in procedures might have a substantial effect. The discrepancy in donation rates between different regions in this country shows some things work well and others don't. Obvious? Certainly. So surely some of the solutions should be too.
Meanwhile, the shortage of donors and the high success rates of transplant operations push families across the world to whatever solution they can find. Even those who at first refuse to believe a new organ is necessary can become among the most determined once they are convinced it is the only cure. The mother who says, "You've got to be kidding," when told her child can only survive with a new liver is transformed into someone who asks persistently, then desperately, "Why can't you do it now? Can't you see she's dying?"
I met an Italian whose mother lived in Moscow for twelve months waiting for a liver, which she eventually received. The cost, obviously, was horrendous, but he still has a mother.
There are heartbreaks among those who want to donate too. In southern Italy, a man came into a restaurant where we were having lunch between meetings. "He wants to meet you," the owner said. "He's not an educated man. He works in the fields over there," pointing to some rough land with a few poor buildings on it. "His son died recently in a motorcycle accident. He said if anything happened to him he wanted to give his organs, like your son. But when the father tried, they could only take the eyes. Now he's sad."
I said something to him about all the good he had done giving two people the chance to see again, but he shrugged it off. He seemed so dejected I felt I had to say something more. I turned to the interpreter. "Please say that even though giving the organs made us feel better, I still miss Nicholas so much that I cry a little every day." "He understands," came the quiet reply. "But not being able to do what his son asked was like losing him a second time."
It's a subject that seems to make everyone cry. You'd expect it of donor families, and we do cry in public from time to time, though I think we all try to set a good example and these are generally quick tears that can be mastered. But the voice of a meeting organizer, crisply reading a list of names, will suddenly crack and you realize that throughout the details of working out who sits where, she's been fighting some deep emotion.
Many recipients weep bucketsful-humbly, as they think how many trained people it took to bring them back from the very edge, gratefully, for the family who made the decision, and painfully, knowing someone had to die so they could live. Just the memory of what their families did for them on the birthday they never expected to live to see can bring it on.
Surgeons call transplantation delicate work, work that has to be done quickly, technically exacting work, but everyday work for all that. They must be right: some 85 percent of transplant operations are successful. To me, however, it is still science fiction, and I'm lost in admiration for whatever combination of skill and spirit keeps them doing it day after day. I'd always imagined they would be proof against tears, however. Yet, at a meeting I attended, a surgeon built like a football player, reading aloud a letter from a patient, simply stopped, unable to finish it.
Of all those involved, the organ procurement nurses must have one of the most difficult tasks in the whole of medicine, having to approach families at the most tragic moment of their lives with a request that offends or shocks many of them.
I often think of a spring evening in Charleston, South Carolina-a day to remind you why the settlers fell so in love with this beautiful area that they felt compelled to create a city worthy of it. Ruthie Stockwell, a transplant coordinator I'd just met, seemed ill at ease. It seemed incongruous, on that gentle Sunday, in a pretty young woman on her way to a charming restaurant-and in good company, obviously.
What's the matter? I asked. "I have four patients right now who need a transplant badly, one very badly," she said. "I try to distance myself from all this, but these are real people and we don't have donors for any of them. You feel so helpless." One of them was a fifty-one-year-old woman with a husband and a thirty-year-old son.
"Just a couple of weeks ago she developed sinus trouble, nothing serious, but enough to make her go to the doctor. He noticed signs of jaundice and referred her to a specialist. `You need a transplant,' he told her. `It's the only way to save your life.' At first the family was in complete denial. `Thanks for the advice,' they said, `but she'll get better. We don't need anything drastic like a transplant.' " In just two weeks, however, she deteriorated alarmingly. "We could lose her tonight," Ruthie commented and tears sprang to her eyes.
We joined the rest of the group, and the conversation turned to other things. But in the middle of dinner, Ruthie's beeper went off. She left to make a call and came back a few minutes later looking like a rainbow, tears and smiles in equal profusion. "We've got a donor," she said and tucked into her half-finished blackened shrimp and Cajun sauce.
While we ate, the chief liver transplant surgeon, Dr. Baliga, flew to Tennessee in one of the small jets under permanent contract to the Medical University of South Carolina. He removed the liver of a young boy, who had died in a car accident that day, and flew back again. By 4:30 a.m., the rest of the medical team had assembled, and the transplant operation began on the fast-sinking patient.
At 7:30, I was with Mark Ruppel, another member of the transplant team, on our way to do a radio interview when his car phone rang. "Ruthie? What's up?" he asked. "Oh no. What kind of problem?" A tremor ran through me. "I know they were informed," Mark was saying. "Yes, tell them it's forty bagels." Besides coordinating the team, staying up half the night and crying about people unknown to her a few days before, Ruthie was apparently the backstop for catering too.
That afternoon, I looked at the darkened room where the transplant patient was still asleep. "We got the liver in prime condition, with very little time on ice," said Dr. Sindhi, the team's other transplant surgeon. "When it's that way it's like having fresh vegetables." Although he'd been at work all night, he was still worrying a little about her. "We want her to wake up soon. There's always the danger of fluid getting on the brain." The donor's other organs had also been recovered and transplanted to patients in Tennessee.
As I flew home that night, I thought of the chance events that had led to this reversal of fortunes for two families. One coming into the light after a nightmare, the other darkened beyond any possibility of relief. What a fearful lottery it all is. I can only hope those parents will find some solace in knowing that, at the end, that little boy helped someone in desperate need when no one else in the world could.
"Some people's stories haunt you," a transplant coordinator said to me one evening. We were sitting at dusk near the water's edge on the Gulf Coast. "I had one patient, a very young woman. She'd had a pitiful life, pitiful, but it seemed she was just getting things in order, taking care of her eighteen-month-old child, all she had. It brought out the best in her. Then one day the little girl was killed in a car accident. It was devastating for everyone. For me too: I had to keep saying to myself, `We mustn't give way.' We talked, this young mother and I, about a lot of things, and in the end she said, `I want to donate the organs. It's the only thing that will get me through.' Well, she did and now she's going back to school. She's even offered to do volunteer work for us." By now twilight had turned to darkness and, sitting there in silence, I shuddered that such agony should be. "Come on," my new friend said. "Let's not mope. She saved something from the rubble."
Every decision to donate produces on average three or four organs. So families faced with brain death have a clear choice: they have the chance to save three or four other families from the devastation they themselves are going through or, equally, condemn them to a lifetime of sorrow. Then there are the tissues, which sound less dramatic, but which, among other things, can cure blindness, relieve the agony of severe burns, and avoid amputations. I sometimes wonder how any other decision is possible.
At present, donations are still too hard for most people, however. In Denver, a nurse who had been involved in many transplants, told me that, after her mother died, she took a deep breath and asked her father, "Shouldn't we donate her organs?" He looked at her in disbelief. "Hasn't your mother suffered enough?" he asked.
Few people say it as baldly as that, but that underlying thought is one reason why people can't bring themselves to make the choice. There are many others-the fear of upsetting other family members, a numbness that paralyzes decision-making, or just a sense that somehow the process is disrespectful.
Some families who don't donate feel they haven't been treated well. They complain they weren't given enough time to absorb the fact of death before they were asked to donate or they never saw the right person. Stories of people coming out of comas after months feed their fear of making a terrible and irrevocable mistake. No one, they say, told them that brain death is death, pure and simple, not a new word for a transitory state. It's easy to see how this can happen. In a hospital with hundreds of stories being played out at any time, real and imagined lapses are bound to occur.
Other families have a strong objection rooted in beliefs or deep feelings, and I would not want to try to talk such people over: this is an intensely personal matter. Everyone, however, is a potential recipient, and that thought often makes people thinking seriously about donation for the first time uncomfortably aware of a moral dilemma: if they object in principle to giving to the pool, by what principle are they justified in taking from it? "A few people I meet take a principled stand against donations," a chaplain told me. "But I've yet to meet any parents who would refuse a transplant for their own child."
But brain death is generally associated with sudden death, and I think that what determines the decision of most families is not a question of belief or of administrative procedures. Instead they arrive at a hospital to find that someone they love, who was in perfect health the last time they saw them, is now dead or dying.
Their minds are in turmoil. Many are distraught. Some are angry with themselves for somehow not having prevented it. "If only I hadn't given him so much freedom, this might never have happened," some parents say. "If only I hadn't been so strict," say others. They are struggling at the same time to come to grips with the mystery of death and a loneliness they sense will never go away. On top of that, to be asked to make a decision they have never thought about is just too much. Worried about doing something they may regret forever, and often unable in time to consult other family members, they do the safe thing and say no.
Yet I can't believe the consequences are what they would have wanted. I often think of something a transplant coordinator said as we traveled together to catch an early morning flight. She had been on duty when a small boy was killed in a road accident. "The parents were in a terrible state. It took everything I had to even ask them if they would consider donating. They wouldn't discuss it. They were angry I'd even mentioned it."
She couldn't persist, of course. "I could see what they were going through. Their world had collapsed. But I had to fight back the tears. All I could think of was that, on the third floor of that same hospital, a mother and father just like these were sitting at the bedside of their little boy, who was dying that night too, praying that somehow he might be saved. But he did die, because a new heart didn't arrive in time. So, instead of one tragedy, there were two-and one, we know, could have been prevented." I can still hear the wondering sadness in her voice coming through the darkness of the airport bus.
I don't know if it's just our involvement, but nowadays I seem to see references to transplants in places I would never have expected: top-of-the-page stories, for example, or specialist magazines outside the medical field, even comic strips, where recently in our local paper a donor gave Humpty Dumpty a new eggshell. Some associations of car dealers are beginning to make organ and tissue donation one of their projects, a breakthrough for a group that has traditionally shied away from any publicity about car accidents. After years of discussion and unnumbered committee meetings, the U.S. Postal Service issued an organ and tissue donation stamp.
Donor families haven't changed much-by and large, they go their own way-but the climate around them has. Among many other places, I think of a cinema, packed to the doors, in a Sicilian town, small and remote enough that even visitors from Messina call it "deepest Sicily." In the audience were a man and woman who, some years before, had donated the organs of their five-year-old daughter, a gentle little creature whose photograph they gave us.
Not long ago they could have expected hostility and incomprehension. They now found themselves being honored. They sat anonymously in the audience, were introduced to thunderous cheers and quickly sat down again as if embarrassed by all the attention-and later went home, as they do every night, to a house that has lost its magic.
Signing the donor card is a big step. It is a clear statement of intent. It's also easy to do: many organizations have them, and in many states drivers can simply add a note to their license indicating their decision. Sometimes it's enough. But more often something else is needed. When death comes without warning, family members often don't remember if there was a card or where it is. For many, it is too painful to look for it.
By far the most effective step is to talk about donation to other family members while death is just a distant concept. It's as if you'd said: when I die I'd like you to give money to this charity or I want you to put this message on my headstone. Not only do we do it, but we do it with alacrity as a last shared act. Similarly for donating organs and tissues. A simple declaration that this is what you want is likely to be sufficient.
The analogy is often made with putting on seat belts: not long ago few of us did it, now only a few don't. We're not at the seat belt stage with transplants-that's why ten people* on the waiting list die every day in the United States alone-but I believe it would take only a small shift in public behavior to put us there.
In non-traumatic conditions, when the issues can be examined calmly, there would normally be some sort of family talk, perfunctory if the household already knew about organ and tissue donation, more detailed if anyone wanted to know more, and perhaps quite protracted if some members didn't agree. In the end those who did agree would sign and would then probably forget about it.
But when death came for that family, perhaps much sooner than anyone expected, at that moment, when most people are caught off guard, a memory should stir for those who signed. "Do you remember?" one of them might say. "This is what he said he would want us to do." A discussion months or years before could relieve the next of kin of what, for those who are unprepared, can be an agonizing decision.
Encouragingly, people seem to be taking the whole issue more seriously and asking all the important questions: How can the doctors be sure he won't recover? Does it really make the recipients healthy or are they going to be basket cases all their lives? Most frightening of all, suppose he isn't really dead? It's not a situation to be taken lightly. Imagine being uncertain afterward.
The key to all these questions is that people must be able to trust the medical team if they are to be cooperative. Just as discussing donations with their family is the most important thing potential donors can do, so earning trust is the most important thing the hospital can do.
One of the key questions people ask goes to the heart of this: if they know I'm willing to donate her organs, will they try less hard to save her? To this, I can only say that in the last four years of meeting doctors and nurses all over this country and overseas in large and modern and small and aged hospitals, I have never heard a remark or caught an inference that they did not do everything they could to save a patient, whether a potential donor or not. Skills vary, clearly, and levels of dedication, but I have not the slightest evidence that patients are at higher risk if they have indicated a willingness to donate.
As for the effectiveness of transplants, before the operation most recipients are usually desperately ill. You have to be ill to get to the top of those long waiting lists: many are hooked up to machines, knowing death may come at any time, others are out of work or going blind, unable to concentrate or do anything useful.
Think only of diabetes, which sounds less threatening than heart or liver disease, but can be a miserable life without salt or fresh fruit or fat. Many diabetics can't stand up or eat properly because of severe stomach pains. Think of not being able to see well enough to dial a telephone or never being able to go anywhere without a beeper in case the organ you need goes to someone else. And, underneath it all, to have the daily fear that the disintegration will go on spreading and spreading.
But unlike normal therapy, where progress can be painfully slow, organ recipients surprisingly often bounce back to life rapidly. We have toured hospitals where patients who were dying of kidney failure a week earlier are now sitting up and moving around. Many leave the hospital within days and are quickly back into a working life. Nor is this just a temporary improvement. We recently met a woman who, when young, had to kneel down to rest three times between the parking lot and her apartment, but, with a transplanted kidney, has lived an active life for the last twenty-eight years.
When I first began to read about this subject, I was astonished to hear of a man who, dependent on a respirator, comatose, and weighing only ninety-eight pounds, progressed from moving around the house to five-kilometer races, then two years later to hiking in the Swiss Alps. Or another, now leading a vigorous life, who was so weak that he could make a sandwich only in stages: after reaching for the bread he'd rest, cut it and rest again, spread on the peanut butter and rest some more. By that time, he said, he was often too tired to eat.
Or Kelly Perkins who, once so sick she had to be carried to bed, climbed the 14,494-foot Mount Whitney, the highest peak in the 48 states, two years after receiving a new heart and, a few months later at the age of thirty-six, Mount Fuji. There, at the summit of Japan's sacred mountain, she scattered the ashes of her forty-year-old donor.
But equally striking is the revival of their spirits. They look younger, feel younger, act younger-and by any test other than pure chronology, they are younger. Why not? They are back in the mainstream. They have lost the deflation that comes with having to rely continuously on others for help. Best of all, people who have felt the presence of death day and night can now renew their confidence in life. "It seems trite," Tony Benedi, the former president of TRIO International, said hesitantly, being a man who doesn't speak tritely, "but coming out of hospital I seemed to feel the breeze on my face and see the clouds moving across the sky for the first time."
It's all new enough that the results still surprise us. The first successful kidney transplant was done in 1954, the first liver transplant in 1963. In 1968, one of Christiaan Barnard's patients lived three weeks with a new heart. As recently as the early 1980s, anyone over fifty-five was widely considered too high a risk for a transplant.
Since then technical skills have improved dramatically, rejection rates have declined sharply, and matching donor organs with recipients is far more sophisticated. These aren't experiments any more. Every year, 20,000 Americans receive organ transplants and 600,000 receive tissue transplants.
These operations are not a cure-all, however, and many things can go wrong then and later. The longer people are on the list, the more likely there will be complications. Some people need two or more transplants, others are too far gone to benefit from the healthiest new organ. I am reminded of this every time I walk through a hospital and imagine the roller-coaster emotions of families who have had a last-minute reprieve and then discover the transplant isn't working.
But organ and tissue donation has a dimension outside medicine. White men are alive today because they have inside them the hearts of black women, Mexican children breathe with Anglo lungs, religious skeptics have Quaker kidneys, Democrats see the world through Republican corneas-and vice versa. Human parts are interchangeable and transplants leap all the conventional barriers. I think of it as a helping hand in the dark from a stranger. Could anything make it clearer that what divides us as people is trifling compared to what we have in common?
*Now 18 a day.