A STUDY IN KINDNESS
Edith Petes donated half her liver to a co-worker with a rare blood type like hers. Wouldn’t anyone?
AS EDITH tells it, a lifetime of trying to do the right thing brought her to this moment. And when the last test result came in and she felt that shiver of excitement, like the difference between planning a long trip and actually having the ticket in your hand, she knew she had made the right decision. “If I had been truly scared I would have backed out then,” she says. “But I was just so happy. I could hardly wait.”
Grant operates on Petes in the first stage of the transplant process
With that, Edith Petes, a modest, unassuming woman of 47, became one of a small band of people around the world to help extend the bounds of modern medicine. She had agreed to donate slightly more than half her liver to a co-worker in need of a transplant. To very nearly a perfect stranger.
A living donation, it is called, as distinct from the “cadaveric” organs harvested from the dead. Kidneys were the first gift of this type: humans have two and can get by with just one. Now livers, cut in half and regenerated inside the donor; and soon perhaps, on a regular basis, lungs. “We’re thinking about that,” says Dr. Gary Levy, head of the multi-organ transplant program at Toronto General Hospital, one of the largest and most innovative transplanters on the continent. “We’d probably do it with two segments, from different donors.”
Doctors view living donation as the way of the future, a neat sidestep around the constantly ballooning waiting lists of sick and fretful recipients. And, let’s face it, around the fact that we Canadians are among the world’s more apathetic organ donors. But this solution is not without its unique hurdles.
Edith, who lives on her own, agonized for weeks over the financial implications of taking so much time off work—up to three months—and whether she had the mental toughness to go through major surgery on behalf of someone else. In this instance, Zahir Ismail, someone she liked but really knew only to kibitz with around the office. There were compelling factors: he had a rare blood type, like hers, and he was wasting away at home with a liver-destroying illness, hepatitis C, because no match could be found.
Putting a toe in the water, Edith underwent the initial barrage of tests—blood work, ultrasounds, eventually an MRI—at each stage being told she could back out at any time. One by one, she met the transplant team: the coordinator, the social worker, the surgeons and the psychiatrist. “He wanted to know if I was in love with Zahir. Or if Zahir was in love with me.” Edith nearly hoots at the idea. She has a great laugh, guileless and ironic at the same time.
The psychiatrist probed, gently but insistently. Might she be doing this for money, or for status? Or perhaps to hurt herself because she had been unable to bear children successfully? Why would an otherwise healthy woman, in the prime of her life, agree to donate one of her organs to someone she had known only a short period?
It’s a very good question.
TRANSPLANT MEDICINE has long been a pioneering force—and not always a gentle one—for next-generation drugs and surgical technique. It’s opened a huge window on immune diseases, cancer treatment and gene therapy. It’s also been a testing ground for society’s compassion.
When it comes to organ donation, Canada’s rate has been stuck at 14 donors per million population for at least a decade. Levels are slightly higher on the Prairies and in Quebec, but overall Canada lags well behind the United States and most of Europe, particularly Spain where the rate of donation is more than twice ours. There is also the biological fact that the body decays so quickly with death, it’s almost impossible to extract a suitable organ from someone who expires at home or even in an ambulance. That’s where living donation has its advantage. In this case it also brought together two extraordinary lives.
“This is a very Canadian story,” Zahir said the first time we met. By this he meant an immigrant story. A wiry 51-year-old Muslim with an infectious grin and big, expressive eyes, Ismail left his native Kenya as a teenager to study in the U.S. and Denmark, before coming to Canada in 1984 to earn a Ph.D. in regional planning and find the woman of his dreams, a fellow student at Ontario’s University of Waterloo.
Petes was a nurse in her native Hungary, a quiet, altruistic woman who left the dead end of Communism with her husband for a new life in Sweden. They came to Toronto in 1991, sponsored by a Hungarian church, but their marriage did not survive the transitions. Petes taught herself English and a new trade, as a legal assistant, and found new friends. Bringing her together with Zahir was very Canadian, yes. It was also a match made in the kindness of the human heart. “I don’t know if I would have done this if he didn’t have a child,” Edith said later. “Maybe. I don’t know. That was a very important factor. Of course his life in itself was worth the risk. And maybe because I lost my children it started me thinking that I couldn’t give life, but maybe I could give a father to a child somehow.” She laughs again. “It just sounds so sappy.” But with Zahir, “I just had this feeling that I was at the right place at the right time. How many times do you get the chance to save somebody’s life?”
DONOR: EDITH PETES, 47
A nurse from Hungary who settled in Canada in 1991 and lives on her own, she agonized for weeks over the implications of taking such a serious step to help someone she barely knew at her workplace, Ontario’s Ministry of Health. ON DECIDING TO GO AHEAD: “I just had this feeling that I was at the right place at the right time. How many times do you get the chance to save somebody’s life?”
RECIPIENT: ZAHIR ISMAIL, 51
Kenyan-born, in Canada since 1984, Zahir was a married father of one daughter working as a health-system planner for the Ontario government. By 2000, his liver was seriously impaired as a result of hepatitis C he likely contracted as a child. SAYS HIS WIFE, ALISON DANTAS: “What Edith did was a completely selfless act. It was about caring and having a sense of responsibility for other people.”
ORGAN TRANSPLANTATION developed in earnest in the 1950s and ’60s. Kidneys came first, then heart and liver; lungs much later— that was Canada’s gift to the world in 1983. Most Canadians of a certain age can remember when South Africa’s Dr. Christiaan Barnard performed the world’s first successful heart transplant in 1968. It was like a door had opened on something both magical and heretical at the same time. Lost in the initial euphoria: only two of the first 100 recipients lived beyond six months.
The early history of liver transplants was nearly as bad, almost grotesque. Organ rejection was not really overcome until the mid-1980s, when powerful immune system suppressants were developed. By then, of course, there were new frontiers to cross.
Japan has led the way with living donors, largely because societal beliefs there discouraged cutting up the dead. Scientists had known for some time that the liver has an amazing ability to regenerate itself, and early cases involved transplanting the small left lobe of an adult liver to a sick child. In 1994, Japanese surgeons pioneered the technique with adults, removing the larger right lobe—up to 70 per cent of the total liver— and grafting it onto someone with an incurable liver disease. That was the gift Edith was giving Zahir.
Living-donor transplants of livers began in earnest in Europe and North America about five years ago. They have not been without problems: seven donors have died in the U.S. and a handful have required subsequent transplants of their own because their liver did not regenerate the way it was supposed to. TGH tells potential donors that globally there’s a one-per-cent risk of death from the operation—not unlike that for routine cardiac surgery. The difference, of course, is that this is a risk a healthy donor does not have to run.
Toronto General’s living donor program started four years ago when it lured home Toronto native Dr. David Grant, 49, a pioneer of what are called complex cluster transplants—several organs at the same time. The hospital’s record has been exceptional: no donor deaths, and of the 88 living-donor liver procedures done at TGH and in the linked program next door at the Hospital for Sick Children between June 1996 and last month, 60 of 71 adult recipients are still living, as are 16 of the 17 pediatric patients. The survival rate for 2002 was 95 per cent, well above the U.S. average of 77 per cent. It’s a record that speaks to both high standards and extreme caution.
“Success is our Achilles heel,” says Levy, the transplant program director at TGH. “We have people coming here in their mid80s looking for a transplant. I’m not sure it’s something I’d want to do at that age but I can understand their rationale.” TGH houses Canada’s largest transplant team, performing nearly 300 a year. Lungs and livers are specialties, both programs among the largest in the world. By the time Zahir Ismail was deemed sick enough to go on the province’s waiting list, it was approaching 320 names. The wait could be four years. On average, 36 liver patients will die before their number is called.
ZAHIR WAS TOLD he probably contracted hep C when he was a child in Mombassa, likely through a well-intentioned but unsafe vaccination. He had his first attack around 1986. But he quickly bounced back and married. Life was good. With two professional incomes—he as a health-system planner, his wife, Alison Dantas, as executive director of the Association of Ontario Midwives—they had a daughter and bought a house in one of those downtown Toronto neighbourhoods where kids play all day on the street. His health didn’t really deteriorate until early 2000 when he had massive internal bleeding. That began the Catch-22 that is hep C: at that point he was too sick for conventional treatment like interferon (his blood platelet count was too low), but not sick enough for a transplant.
His doctor at first estimated it would be 10 to 12 years before he’d be an eligible candidate for the surgery. But just 2V2 years after that diagnosis he’d deteriorated so much he was put on the list in July 2002. During that year he was hospitalized eight times, often for more than a week at a stretch.
A sister applied to be a donor but didn’t meet the TGH criteria. So did his wife, even with a young child at home. Alison went all the way to the final test before it was determined her liver was a bit too small, which took the risk of death just beyond the oneper-cent range. “It was a devastating moment,” she said later.
At work, word spread. Edith contacted Zahir and he advised her to call the hospital, but then they stopped talking. “I did not want to influence her,” Zahir said. “I didn’t want to get his hopes up,” said Edith. When Edith passed her final test, an MRI designed to see if there were any structural anomalies on her liver, she was called the next day and given a choice. Do you want to do this a week from now? Or two?
FOR THOSE INVOLVED, Edith and Zahir looked to be the poster couple for the brave new age of living donor transplantation. No one had seriously thought this might not work out. But this kind of operation is more difficult than attaching a cadaveric organ, because four sets of very tiny blood vessels and a bile duct must be painstakingly separated in both the donor and recipient, then reconnected. What makes it possible are the latest tools of micro-surgery.
Zahir’s operation took 14 hours, nearly double what it should have. One of his arteries, weakened by the hepatitis, collapsed in the midst of the operation and a new one had to be fashioned from the artery to his spleen, a tricky but not unforeseen complication. All four surgeons from the transplant unit ended up working on Zahir; he received 26 units of blood.
For donors, the biggest dangers from the operation are excessive bleeding and blood clots that might travel up an artery and cause a stroke, a fear that is reduced by the use of blood thinners. For the recipient, the major risks are rejection, infection (the immunosuppressive drugs increase the risk of minor infections and more serious ones like pneumonia) and bleeding (the new liver needs time to make blood-clotting proteins). Zahir survived the surgery, but four days later he was back in the operating room to drain an infection—E. coli, a virulent strain.
What followed was the delicate balancing act of organ rejection as his doctors pulled back on the drugs needed to welcome the new organ—the ones that suppress his immune system—so they could crank the system up again with antibiotics. Eight days after the initial operation, as Edith was leaving the hospital, Zahir had his best day: he was up and walking the halls on his own. Edith saw him just before she left for home. But when Alison arrived in the early evening, she had trouble waking him. She realized something was terribly wrong. Zahir was rushed back into surgery but it was too late: the E. coli-weakened artery had broken and he had been bleeding internally. He died that night.
To those who knew him, Zahir was a larger than life character—a kind, happy-golucky man who had travelled the world, and become so Canadian he required regular postings on the Toronto Maple Leafs, even on his sickbed. Nearly 350 people from many different walks of life showed up for his funeral.
TO THOSE who knew him, Zahir was a larger-than-life character-a kind, happygo-lucky man. Nearly 350 people from many different walks of life were at his funeral.
One unanticipated loss was that of TGH as a touchstone, both for Edith and Alison. The buildup to a transplant is so intense that the surgeons and social workers can seem closer than family as the case progresses. Shortly after Zahir’s death, Alison was numbed by guilt: should they have waited a little, she was asking herself, until they were sure he was stronger? A month later, she had a different perspective: “I’ve been over it a hundred times in my mind. Zahir had the best surgeons, the best care and the closest family anyone could have had. I think all you can say is that, with hep C, the longer you wait the more susceptible you are to a fatal outcome because it eats away at your liver and your immune system.” Much better, she said, to transplant as early as possible, before you waste life’s precious energy on a waiting list. “The weaker a person gets,” she says, “the harder it is.”
For Edith, the guilt was much more personal. “I sat here,” she said, in her onebedroom apartment, “and wondered, ‘Was it my fault?’ ” She is a strong, cultured woman who reads widely and believes in selfimprovement. She is also someone who suffered four stillbirths. “I wondered,” she allowed once in a very small voice, “if I was capable of giving life.”
But in the weeks following Zahir’s death, Grant assured her there had been no problem with her liver. And she consoled herself with the fact that in his last weeks, from the time she called to tell him of the date of the operation, Zahir Ismail was a changed man. He bounded into the office to renew old acquaintances. He was happy and playful again, not sick and depressed, and that would be the memory his daughter would have of him. As Alison says, “at least he didn’t die in a futile way, waiting and wondering whether someone else would have to lose a loved one” so that he might gain an organ.
Six weeks after her operation, Edith went back to her job as a legal assistant at the health ministry, early by some people’s accounts. She needed something to take her mind off what happened. Her liver is now back to its normal size. She has a huge scar across her stomach but the pain—like a clawing at her insides was how she described it— has eased.
A DECADE’S DEARTH OF DONORS
Patients waiting for transplants
Died on waiting list
Source: Canadian Institute for Health Information
Edith is a hero to some, which causes her no end of embarrassment. One young man in his mid-20s, a son of friends, who heard of her story called a hospital to inquire about becoming a living donor. And her co-workers have rallied around, helping in the early going with meals and showering on her the hopes and dreams they had held for her and Zahir. Edith and Alison have also become close, a friendship born of long afternoon talks in a hospital ward and a sacrifice that goes beyond the norm.
“What Edith did was the biggest contradiction on the status of our world today,” says Alison, “because it was a completely selfless act. It was about caring and having a sense of responsibility for other people. It is the kind of thing we want our children to learn.” Given the outcome, Alison says, it was doubly generous: “I can’t begin to imagine if I had been the one to donate to Zahir and lost him and been in recovery myself. Not being able to be there for my daughter in the way that I had to be.”
Advocates of living donations like to make two points: that the process can bring families together and that they provide earlier, more timely intervention. But both have to be taken with a grain of reality. Living-donor recipients tend to be sicker than patients who get cadaveric organs. And the hurdles to being a living donor are considerable. Any hint of reward or of long-term health consequences and you are disqualified. At TGH, only one in five makes the grade.
Still, this is undoubtedly the way of the future. Ontario, for one, is making a huge commitment to transplant medicine, including a promised $27.5-million gift to TGH to help double, perhaps even triple, its program over the next five years. Part of this plan is to increase the number of cadaveric donations through public appeals, possibly following the Spanish example of having donor advocates at major trauma hospitals. Spain also has a system of presumed consent, which some here support. But with waiting lists getting longer, and with demand for livers especially expected to spike upwards—an offshoot of the tainted blood problems in the 1980s—living donation will have to pick up the slack.
Both types bring their own distinct costs— standby surgical teams and hired aircrews for cadaveric removals, a double set of frontline staff for living donations. There are also ethical considerations. Should a scarce organ go to a prisoner serving a long sentence? To someone with a life-threatening disease like AIDS? Or to someone, say, in their 70s?
The yardsticks are constantly moving. Surgeons in Winnipeg and Edmonton have attempted living lung transplants, using portions of a lung from two donors for someone in need. But an adult donor who gives up part of a lung will go on to live a somewhat diminished life. For many parents that would be an acceptable trade-off to save a child. If living lung transplants become routine, today’s strict rules about donor eligibility will almost certainly change to accommodate that greater degree of sacrifice.
And what about patients who don’t meet the criteria for a waiting list? Perhaps they have a cancerous tumour on their liver but they also have a close friend or a spouse who wants to donate an organ and improve their quality of life, if only for a time. The technology has arrived. A liver today, a lung tomorrow, literally the breath of life. How many Ediths are really out there? fill