CANADA: She made medical history, helped save lives of four complete strangers

. TORONTO, Ontario / The Globe and Mail / Life / Health & Fitness / September 24, 2009 History-making surgery My domino kidney When Lisa Sayer decided to give away one of her organs, she knew some people would think she was crazy. What about the health risks? What if your kid ever needs one? What if the recipient is a jerk? She didn’t expect to make Canadian medical history – and help save the lives of four complete strangers Lisa Sayer, who donated a kidney to a complete stranger, had always wanted to do something altruistic. She is one of a growing, but still rarefied, group of Canadians who have chosen to become ‘non-directed altruistic donors.’ John Lehmann/The Globe and Mail ___________________________________________________________________________________ Marina Jiménez From Thursday's Globe and Mail Lisa Sayer and her husband live on a small piece of paradise on Saltspring Island, the largest of the Gulf Islands scattered between the mainland and Vancouver Island. From the porch of their green bungalow is a stunning view of the Pacific Ocean, complete with lazy sailboats and a rocky beach strewn with shells. Ms. Sayer, 47, has spent the past decade raising her four children here, working as a veterinary assistant and indulging her husband's passion for fishing and the outdoors. Earlier this year, that idyllic life took a remarkable turn. A couple of years ago, she had come across a magazine article about someone who had donated a kidney to their partner. The piece included this alarming number: Nearly 60 people in Canada die each year waiting for a kidney. Ms. Sayer, who lost her father to Parkinson's disease and two friends to cancer, hated the feeling of helplessness as she watched loved ones die. She had always wanted to do something altruistic and dreamed of volunteering overseas. She had already donated blood and signed up to be a blood marrow donor. This new thought seemed radical, yet it made perfect sense: She could give one of her healthy kidneys to a complete stranger. “You take something out of someone and you put it into someone else,” says Ms. Sayer, a fit, tanned blonde with aquamarine eyes and a radiant smile. “I fell in love with that idea. It became very appealing.” Ms. Sayer had no idea she would become the domino in a chain of events that would make Canadian medical history. In an extraordinary new program in the high-stakes world of kidney transplantation, her gift of life would end up helping not just one person, but four. ===============================================================================

“ You take something out of someone and you put it into someone else. I fell in love with that idea. It became very appealing.” — Lisa Sayer, non-directed altruistic donor

=============================================================================== Living donors Ms. Sayer is one of a growing, but still rarefied, group of Canadians who have chosen to become “non-directed altruistic donors.” They give one of their healthy kidneys to an anonymous stranger. In return, they ask for nothing, except that their travel and out-of-pocket expenses be covered. (It is against the law to buy or sell human body parts.) In Canada, 35,000 people have kidney disease, and there is a chronic shortage of organs. Nearly 4,000 people are on the wait list for a kidney from a deceased person, a wait that can extend to a decade in Toronto and Vancouver, depending on the patient's blood type. It's no surprise, then, that live kidney donation is an attractive option, comprising 40 per cent of all transplants last year in Canada. Most donors give a kidney to a family member or friend. However, in 2002, St. Paul's Hospital in Vancouver began a pilot program for non-directed altruistic donors. Since then, more than 40 people have been screened to determine whether they are physically and psychologically suitable, and five have gone on to donate. Many wonder what motivates a person such as Ms. Sayer to give a kidney to someone she has never met. Are they searching for meaning through an act of selflessness? Are they prone to “projects,” with an overwhelming need to help others? Or are they just plain crazy? Some kidney patients even feel queasy at the idea of taking somebody else's organ, doctors say. “There are patients out there who say they won't take a kidney from someone who is alive. They feel it could be bad karma,” says John Gill, a transplant nephrologist at St. Paul's. Of course, he adds, the vast majority of patients just want to live. Answering the naysayers At first, Ms. Sayer told no one but her husband, Jamie. He thought she was joking. Donating a kidney to a family member, he could understand. But to someone she didn't know? “What if he is a jerk or a creep?” he said. Ms. Sayer expected naysayers as news leaked out on Saltspring, and she did encounter a few. But you're a mother – what about your children? What if you experience complications in surgery? What if the kidney patient dies anyway? What if your kid ever needs a kidney? She countered the objections one by one: If one of her children needed a kidney, they could turn to a sibling. If she hung on to her kidney forever, the opportunity to donate would pass her by. And if the patient's immune system rejected her kidney, she'd still have no regrets. “It's my body, and I will do what I want with it,” she said. =================================================================================

“ There are patients out there who say they won’t take a kidney from someone who is alive. They feel it could be bad karma. ” — John Gill, transplant nephrologist

================================================================================= Pilot project ‘kidney swap' The screening process for donors is thorough. When Ms. Sayers first called up St. Paul's Hospital in 2007, she was told she would have to undergo a series of rigorous medical and psychological tests. “They asked me why I wanted to donate,” she said. “I told them it felt like the right time to do this and that my kidney was more important to someone else than to me. I could live with just one.” The assessment team asked her to wait a year. She had just lost her father, and her marriage was going through a rough patch. They worried she was vulnerable. But a year later, Ms. Sayer was more determined than ever – even after Jamie lost his job as a millwright, putting the family under financial strain. In the end, he had come round: “We'll make it happen,” he told her. Dr. Gill told the Sayers about a pilot program called a “kidney swap.” The logistically complex idea, which involved a series of simultaneous transplants in different hospitals, had already been done in Europe and the United States. Now an innovative database developed by Canadian Blood Services would allow Canadian kidney donors who were incompatible with their intended recipients to register their blood and tissue type and donate to a stranger. In return, their partner would receive a kidney from a donor whose blood type also didn't match their intended recipient. So far, 30 incompatible donor-recipient pairs in Ontario, British Columbia and Alberta had registered. Ms. Sayer was a universal donor, meaning she had blood type O and matched all other blood groups (unlike the other donors in the registry). She was the domino who could precipitate a chain of transplant surgeries. The simultaneous surgeries were set for June 24 at St. Paul's, Toronto General Hospital and Edmonton's University of Alberta Hospital. There would be three incompatible pairs from the database, Ms. Sayer and, since she had no intended recipient, one lucky person from Vancouver's wait list. =================================================================================

“ I felt like I was dying. I knew it was a horrible disease and that there was no cure. ” — Feng, anonymous recipient, on her diagnosis

================================================================================= Waiting for death Across the Strait of Georgia, in Vancouver, Feng is the polar opposite of Ms. Sayer. (Real identities cannot be revealed to protect the anonymity of the program.) Pale and petite, in her early 40s with long, dark hair, Feng has led a life of loneliness and loss. Raised by her grandmother in a city close to Beijing, she is estranged from her parents. She immigrated to Vancouver in 1991, leaving behind her husband and son. She had hoped to find a better life and sponsor her family. Feng took language classes to improve her English but was exhausted from her job as a waitress. She found it difficult to get ahead. In the end, neither her husband nor her son wanted to leave China. In 2006, Feng's grandmother died. An 18-wheeler crashed into her car. She lost her job. Then one night, after eating a hot dog at a casino, she became violently ill and ended up at Richmond Hospital's emergency ward. A few days later, she was transferred to St. Paul's. On March 10, 2006, Feng was diagnosed with kidney disease. She had a catheter inserted in her abdomen so she could begin peritoneal dialysis. Four times a week, she had to administer a solution through the catheter to clean the toxins from her blood. Dr. Gill put her on the wait list for a kidney, but warned it would be five to eight years. “I felt like I was waiting for death,” she says through a Mandarin translator. One close friend offered to donate a kidney, but he was ruled medically unsuitable. Feng couldn't bring herself to reach out across the ocean and ask family members she hadn't spoken to in years for such a momentous favour. Then, one day in the spring of 2009, the year of the ox, her luck changed. Dr. Gill summoned Feng to St. Paul's. She sat in a windowless examining room on the building's sixth floor and wept when he gave her the news. “It was like a dream,” she says. “The doctor told me I had a kidney.” The ox, a symbol of perseverance, had brought her good fortune: She would be part of the pilot kidney swap program. Before surgery, she was sworn to secrecy. The program was anonymous and there was still a chance one of the donors would drop out, precipitating the cancellation of all operations. Feng prayed nobody would change their mind. =================================================================================

“ The donor in B.C. [Lisa Sayer] can never know how positively she has impacted all of our lives. ” — Thomas, kidney recipient

================================================================================= Donor-recipient join list In the Greater Toronto Area lives another kidney patient, named Thomas, a clean-shaven, athletic man with a quiet intensity. Diagnosed in his early 40s, he began dialysis 31/2 years ago and managed to hang on to his job in the civil service, working three shifts a week. At first, he felt fine, but slowly his health deteriorated. He lost his appetite, and became anxious and forgetful. “It was like I was thinking through a fog. Everything was heavy,” he recalls. His wife, Katherine, adds quietly: “He was so moody.” Normally the organized one, Thomas, 50, began to fret over trivial things. Katherine, a soft-spoken blonde accustomed to her husband taking the lead, took over the household, the finances, car maintenance and the garden. In 2008, Thomas's doctor told him he needed a new kidney and that the expected wait for his blood group – B positive – was 10 years. Katherine, healthy at 57, offered to donate one of hers. After blood and tissue tests, the doctor declared they were a mismatch; Katherine's blood type – A negative – was incompatible with his. Normally, the process would have ended there, and Thomas would have returned to the wait list. However, their timing was fortuitous: Ed Cole, head of Toronto's University Health Network's kidney transplant program, told them they could both take part in a pilot program he had been instrumental in spearheading. If Katherine agreed to donate her kidney to someone else, then Thomas would receive one from someone also registered in the program. ==================================================================================

“ It’s natural human curiosity. My kidney is now taking trips, going on the subway, going shopping inside someone else’s body. ” — Lisa Sayer, on wondering about her donation recipient

================================================================================== Simultaneous surgery On June 24, 2009, medical history was made. The lives of Thomas and Katherine, Feng, Lisa Sayer and two other donor-recipient pairs came together in four different operating rooms across the country. All the recipients stayed at their home hospitals, while the donors, including Ms. Sayer, flew to other cities to give up an organ. To guard against the possibility of any one donor changing their mind, all four were anesthetized at exactly the same time, 10:30 a.m. ET. Michael Robinette and Anand Ghanekar operated on two donors at Toronto General, Bill Gourlay at St. Paul's, and Gerry Todd at the University of Alberta Hospital. To safeguard the program's anonymity, the donors weren't told who received their organs, and recovered on different wards, away from the recipients. Ms. Sayer woke up in Toronto, groggy and grateful to have her husband by her side. She was released five days later, her abdomen still tender, but well enough to visit Niagara Falls. By week's end, they had flown home and were already playing host to the first of three consecutive sets of houseguests. “I've been so busy I haven't had time to experience the emotional low that some donors go through after surgery,” she says. Ms. Sayer has lost 10 pounds, and feels physically different, as though something is missing. She has no pain, but there is numbness around the four-inch scar on her right abdomen. Ms. Sayer remains curious about how life has changed for the recipient, what it feels like to be healthy and free of dialysis. But donor-recipient meetings can be fraught with conflicted emotions. In the United States, there have been cases of donors feeling disappointed in their recipient if they lead less than ideal lives or somehow seem ungrateful. Recipients may feel resentment toward the donor. Still, the hospital is prepared to arrange a meeting down the line – if both sides are willing. “It's natural human curiosity. My kidney is now taking trips, going on the subway, going shopping inside someone else's body,” she says. Post-op Thomas knew the moment he woke up from surgery that his new kidney was working. His abdominal catheter for dialysis had been removed, and his head felt amazingly light. “Everything was so sharp and visually clear. I felt like a big weight had lifted.” He has recovered well, though he will remain on anti-rejection drugs for the rest of his life. Soon, Thomas plans to return to work full-time and resume his volunteer duties, counselling other kidney patients. He feels a profound sense of gratitude to his wife and to the three other donors: “The donor in B.C. [Lisa Sayer] can never know how positively she has impacted all of our lives” He dreams of canoeing again in Algonquin Park, skiing at Blue Mountain and cycling around his neighbourhood. Katherine has also made a good recovery: “Donating a kidney started out as helping my husband; it ended up as helping a stranger.” For Feng, a new kidney has meant more than just physical renewal. It's been a transformative experience. She now feels surrounded by love and support. “Before, nobody paid any attention to me. I had nobody to talk to,” she says. “Now, I have all the people at St. Paul's, who have been so kind. I would like to meet the donor. The person already feels like a member of my family.” [rc] By the numbers 35,000: Number of Canadians who have kidney disease 60: Estimated deaths each year of people waiting for a kidney transplant 4,000: Approximate number of people on the wait list for a kidney from a deceased person $300,000: Amount in health-care costs that could be saved over a patient's lifetime if a faulty kidney is replaced 40: Percentage of last year's 1,200 kidney donations that came from living donors 90 to 95: Percentage of transplanted kidneys from living donors that work well after a year 15 to 20: Number of years, on average, that successfully transplanted kidneys from living donors last 85 to 90: Percentage of transplanted kidneys from deceased donors that work well after a year 10 to 15: Number of years, on average, that successfully transplanted kidneys from deceased donors last Marina Jiménez and Dakshana Bascaramurty Sources: Kidney Foundation of Canada Dr. John Gill © Copyright 2009 CTVglobemedia Publishing Inc.