A Family Battle with Heart Transplants

John McBride lay near death as his loved ones prepared for the inevitable. A timely heart transplant saved his life. Twelve years later his son is given the same diagnosis.

A Family Battle with Heart Transplants

A plot had been set aside, the will signed, the last rites performed by the family minister. On May 6, 1997, all the preparations for John McBride’s death were complete. Exactly 68 years, nine months and 15 days earlier he had been born in Toronto, the last of five children. Now he was in end-stage heart failure. He would need a miracle to survive the night.

Mary, his wife of 30 years, sat by his bedside knitting the afghan she had started when the hospital stays grew more frequent. In John’s rare moments of wakefulness they talked-about family and love and such practical things as dwindling health insurance-while the machines monitoring his vital functions beeped and hummed in the background.

An array of drugs had prolonged John’s life, but couldn’t cure him. In December 1995 he had been diagnosed with dilated cardiomyopathy, a disease of the heart muscle that causes the left ventricle-the organ’s main pumping chamber-to stretch and enlarge so that it can no longer eject blood effectively. Profound fatigue and shortness of breath can make even everyday tasks, such as eating a bowl of soup, almost impossible.

An experimental surgery called the Batista procedure, in which part of the left ventricle is cut away, had been attempted six weeks prior in a bid to buy time until a suitable donor heart could be found. The surgery had gone well, but ten days later a heart valve failed and John was back where he started.

With all medical options ostensibly exhausted, doctors were simply trying to make John’s final hours more comfortable. A counsellor paid a visit to his room, but quickly determined that John didn’t need his services-he had accepted his fate.

Then suddenly, around 8 p.m., Dr. Robert James Cusimano walked into John’s room. “You want a transplant?” asked the heart surgeon. “Yes, I want a transplant,” John whispered.

“I think we have one for you,” said Cusimano. A heart from a 50-year-old donor had just become available. Organs weren’t typically harvested from people older than 40, but it did happen from time to time. And with that came an opportunity doctors were more than happy to grab: giving a too-old recipient a sliver of hope thanks to a too-old heart. With seemingly not much to gain, but nothing to lose, John agreed.

“I’ll see you upstairs in a couple of hours,” said Cusimano. John would become Toronto General Hospital’s 223rd heart recipient.

North American hospitals began working with older recipients and older donors in the mid-1990s, following pioneering work by the UCLA Heart Transplant Program, the first to develop a so-called “alternate list” that matches older donors and patients.

The justification for the alternate list was easy, says Dr. Vivek Rao, current surgical director of heart transplantation at the Toronto General. “Since the donor heart is going to go to waste and we’re willing to do the transplant in an elderly patient, why not give them the chance?”

Rao says the age of donors and recipients has been climbing over the past decade, a result of increased success with such transplants and a shortage of donors. While an ideal donor heart typically comes from someone under 40, “extended criteria” donors-deemed as such because of a variety of factors, including age-now provide the organs for the majority of transplants.

Leading up to the operation, Cusimano soothed his patient’s nerves, saying he expected the procedure to be relatively straightforward, since he had performed the Batista surgery weeks earlier. The only bump occurred when he cut open John’s chest and found that the rib cage had mostly healed, requiring him to make the same cuts again. As he wheeled John into the intensive care unit to recover following the operation, Cusimano flashed Mary a thumbs-up. Mary could detect a steady rhythm coming from the heart monitor. It had been a long time since she had heard that sound.

The transplant a success, John was released from the hospital three weeks later. A photograph of the homecoming shows him in a wheelchair, worn out but happy, surrounded by family. He was considerably weaker and down to 130 pounds from 195, but he was alive. John had thought he was never going to see his home again.

He never found out any information about the donor other than age and gender, but every five years, on the anniversary of his transplant-his “re-birthday,” he calls it-John sends a letter to the donor’s family through the hospital. “I owe my good luck-my life-to my donor and the program.”

The McBrides’ story had all the makings of a fairy-tale ending. But on December 12, 2009-12 years, four grandchildren and an estimated 475 million heartbeats later-John’s “new” organ faced yet another challenge, one for which advanced medicine has yet to find a cure: heartbreak.

John and Mary’s only son, Michael, then 41, was getting ready to host a Christmas party at his Mississauga home. He’d been feeling under the weather, but chalked it up to aging.

At around 4 p.m., after lugging a case of beer up from the basement, Michael was overcome by fatigue. He told his wife, Anne, that he was going to lie down. When she came to get him a couple of hours later he couldn’t get out of bed. Anne’s sister, a nurse, who was at the house, listened to Michael’s heart. Its resting rate was approximately 130 beats a minute, well above the average adult range of 60 to 100 beats. Michael was suffering from tachycardia, an acceleration of the heart rate that can be life-threatening if not treated promptly.

Michael went to the ER at the nearby Credit Valley Hospital for treatment. A follow-up echocardiogram two days later confirmed the family’s worst fears: dilated cardiomyopathy. John, in particular, was reeling: “We knew immediately what was ahead for him. And usually what’s ahead is that you die.”

The odds of Michael being diagnosed with this serious heart problem were significant. Several men on John’s mother’s side had died in their 40s, arguably due to cardiac issues. John’s nephew, Brian Conway, is a heart-transplant recipient and Brian’s 27-year-old son, Ryan, has been diagnosed with dilated cardiomyopathy.

Studies have found that genetic transmission can account for 20 to 35 percent of all cases of dilated cardiomyopathy. Scientists at Toronto’s Mount Sinai Hospital have examined John’s blood and sent samples to research facilities all over the world in an attempt to identify the faulty gene behind the condition, but no headway has been made.

John couldn’t help but blame himself for the possibly fatal fix Michael was in. “It obviously was hereditary,” he says, “and I gave it to him.”

Michael left his job as a mortgage salesman with First National Financial immediately after the diagnosis. He soon found himself exhausted just walking down stairs and often slept for as much as 20 hours a day. There was no attempt to hide his condition from his two children, but Michael fretted that he would pass on the illness.

The McBrides mobilized once again. Michael’s relationship with his father had deepened during John’s health crisis and now the two men spoke almost daily. But even as John attempted to assuage Michael’s fears, he knew better than anybody that the situation was dire.

Michael’s heart was irreparably damaged, but getting on a transplant list in no way guaranteed survival. “About a quarter of all people on the transplant list die before ever receiving a new heart,” says Dr. Heather Ross, medical director of Toronto General’s cardiac transplant program and deputy director of the hospital’s multi-organ transplant program. A 2010 report by the Canadian Organ Replacement Registry states that between 2000 and 2009, 258 out of the 1,158 people on the heart-transplant list died while waiting.

The hurdles to a transplant match are tremendous. Not only do doctors require a matching blood type but donor hearts must also come from a person of similar size-the heart of a five-foot-four person simply wouldn’t function as effectively in the body of a six-foot-four person. Also taken into consideration is a patient’s transplant status, with the most ill given priority. If there is a match of all three criteria, preference is given to whoever has been on the transplant list the longest.

Like his father, Michael turned out to be one of the lucky ones.

It is late November 2011, a little more than a year since Michael became his family’s third heart-transplant recipient, after spending two months on the list. The Christmas tree is already up, stockings hung on the fireplace. A radio plays softly in the background. On a bookshelf sits a framed photo taken by a member of Michael’s ten-person surgical team-led, coincidently, by Dr. Robert James Cusimano, the same surgeon who had performed his father’s transplant more than a decade earlier. It shows Michael’s diseased heart, crimson-red and engorged, lying beside its smaller, healthier replacement.

There have been slight setbacks (three rejections, all of them minor) and serious crises (a nasty viral infection that led to an even nastier staph infection, requiring hospitalization). For the most part, though, Michael is making a strong recovery. Increased blood flow from the new heart means his fingers and toes no longer feel like icicles, and he finds himself relishing the small things: drawing a decent breath, finishing a meal with ease. While he still requires a 1 1/2-hour to two-hour nap most days, Michael generally feels great and, at times, even “fantastic.”

When Michael was first diagnosed the hospital had offered to provide him with a mentor who could help him cope. He declined. “I looked to my dad,” says Michael. “Most people really don’t know what to expect. I had a good idea of what was going to happen along the way.” His father’s experience made him optimistic that everything would work out for the best, yet simultaneously fearful of what appeared to be a long-and life-threatening-journey.

A few months prior to the transplant Michael had indulged his childhood love of Star Wars by purchasing a precise replica of the distinctive white armour worn by the film’s iconic Stormtroopers. Today Michael pulls out the costume, which he keeps in a small basement room filled with carefully stored memorabilia-everything from antique pistols and rifles from the First and Second World Wars to uniforms worn by Allied forces.

The show-and-tell session complete, Michael effortlessly climbs the stairs back to the house’s main level. A devout student of military history, he appreciates the incredible effort-not to mention good fortune-involved in winning a seemingly unwinnable battle.

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