Taking heart - and giving one

MARGARET WENTE

From Saturday's Globe and Mail

The phone call came at 6:20 in the evening. David Prince thought it was probably a telemarketer, because the call display flashed an unfamiliar name. He picked it up anyway. “How soon can you be at the hospital?” the caller said. “We want you on the table at 7:30.”

Four months after David Prince began to die, they had a heart for him.

Valerie Serba's phone rang at 2 a.m. It was her former husband. Their 25-year-old son, Michael, had been brutally assaulted and lay unconscious in a downtown Toronto hospital. The situation, he told her, was not good. “Tell Michael to hold on till I get there,” she said.

The two sides of a heart transplant are mirror images. One is a catastrophe; the other, a second chance at life. Someone must die so that someone else may live. The heart is just a muscle, a pump. It is not the most complex organ in the body. But most of us also think of it as the seat of the soul. The transfer of a living heart from one person to another is the most precise, intimate and powerful of transactions.

David Prince did not get Michael Serba's heart. Anonymity is part of the transaction, and I am not supposed to tell you who donated the heart that David got, or who received Michael's. But their two stories will give you a sense of the intertwining of strangers' lives and deaths that each transplant entails.

Heart transplants are no longer heroic medicine. In Canada they take place more than 150 times a year. The average life expectancy of a transplant patient is now 10 years, and one recipient recently made it to 28 years. Many people make remarkable recoveries. Dale Shippam, a firefighter from Thunder Bay, recovered so completely that he requalified for his job and continues to fight fires.

But there are more candidates than hearts. Dr. Heather Ross, the medical director of the cardiac-transplant program at Toronto General Hospital, says that one out of every three or four of her patients dies waiting.

A high flyer's long fall

Long, lean and athletic, David Prince struck everyone as a man in unusually good health. At 58, he took care of himself. He worked out and ate right. His two greatest passions were work and golf. He was widely respected in the investment business, where he sold his insights on global strategy to a roster of blue-chip institutional clients. His style was driven, focused, and triple-A.

His wife, Susan, 44, assisted him in the business and also worked as a broadcaster with the business news network, BNN (which is affiliated with The Globe and Mail). They were a close couple, partners in the full sense of the word.

“Suze and I were putting in a lot of hours,” David says. “It was well beyond 80 hours a week. We were talking about how we were going to restructure. We knew it was out of control.”

On Jan. 12, they flew down to Brazil for a much-needed holiday. The plan was to play golf and regroup. But they never made it to the golf resort. On a walk in Sao Paulo on the morning of Jan. 14, David had a massive heart attack of the type known as “the widow-maker” because it is almost invariably fatal. The same kind of attack killed his father at 64.

But David was very lucky. They were staying at a good hotel, and within minutes the hotel doctor arrived, made the diagnosis and called an ambulance. It was Sunday, so the notorious Sao Paulo traffic was unusually light. On the way to the hospital they began prepping him for surgery. They arrived at one of the city's best private hospitals, where the right surgeon was on hand to insert three stents to open up the blood flow from his heart. David spent the next two months there. For four weeks he was in a coma that the doctors induced to take strain off his damaged heart.

Susan consulted with the Brazilian hospital staff and frantically searched for medical advice back in Toronto. As David lay in a coma, she thought about the conversations they had never had. “I looked at him and realized that I didn't even know what kind of casket he wanted.” She wondered if there was any point in praying if you don't normally pray.

Susan encouraged David's two grown children to fly down to be with him. She wrote optimistic emails to family and friends saying he was on the mend. She tried not to think about what it might be like to be a widow.

After 65 days, the Brazilian doctors judged David's heart function passable. The couple flew home, believing he was on the slow road to recovery. Even so, Susan had arranged for them to see a top cardiologist as soon as they landed.

The cardiologist didn't like what he saw. He gave Susan his pager number and booked them an appointment at 9 the next morning to see Heather Ross in the transplant program at Toronto General.

“I was pretty overwhelmed when I saw him,” says Dr. Ross, 44, a dynamic personality at the top of the heart-research field. “His blood pressure was really low. His hands and feet were cold because his body was starting to shut down. He was in walking cardiogenic shock.”

David's life expectancy was somewhere between hours and days. Dr. Ross told the Princes that he needed a new heart.

He doesn't remember much about what happened next. Susan does. They took the elevator down to the hospital's big, noisy lobby and sat at Starbucks as they waited for the hospital to find him a bed. “He wanted to organize stuff, to straighten out his affairs: Would there be enough money for the kids? Would I be okay?” She knew he was frightened. But he didn't talk about that.

A good heart

Michael Serba was a disciplined young man – tall, athletic, dark-haired and focused. At 25, he was finishing his MBA at Norwich University in Vermont; he had gotten there on a hockey scholarship and was looking forward to his graduation this spring. In November he phoned Valerie and proudly told her, “Mom, pretty soon I'll be able to write ‘Michael Serba, MBA.'”

That was the last time she heard his voice.

Visiting his father in Toronto over the American Thanksgiving holiday, Michael went out one night with some friends. Some time around midnight he went to a bank machine, where he was assaulted by a stranger. He fetched his friends and they set out in search of the assailant. That's when someone – the same man, police say – bashed his head in with a brick. (The man is now awaiting trial.)

When Valerie reached the hospital, a doctor gently told her that it was the worst possible scenario, and that the family might want to consider organ donation.

“I was in denial,” says Valerie, a warm, fair-haired woman of 55 who now lives in Hamilton, Ont. “I knew, but I didn't want to accept it.” Michael's colour was good, and he was still breathing with a ventilator. How could they be so sure there was no hope?

She met the hospital's organ coordinator. They talked about Michael's life and the tests that were being done to determine brain function. Gradually Valerie realized what she wanted to do. She wanted to donate Michael's heart. “It was such a good one,” she says.

The war room

The Trillium Gift of Life Network is the provincial agency that coordinates organ and tissue donations. Its offices are on Toronto's “Hospital Row,” across the street from Toronto General. Its nerve centre – or war room – is where the calls come in to notify the coordinators of potential donors.

On the wall is a whiteboard where they use magic markers to record the status, location and vital statistics of all the current potential donor candidates in the province – age, sex, blood type, type of injury, list of recoverable organs, whether the family has been approached and whether they've consented to donate.

A few hours after Michael's fatal injury, his vital statistics were added to the board: male, 25, head trauma; heart, liver, kidneys, pancreas.

Suitable organ donors are rare and precious. Only 1.5 to 2 per cent of hospital deaths meet the criteria – in Ontario, about 100 people a year. Donors must have suffered a catastrophic medical event that causes brain death – stroke, hemorrhage, a fatal blow to the head – but leaves the other organs undamaged. One moment they are healthy and the next moment they're dead. (Some people who've suffered cardiac arrest are also eligible.)

Health-promotion strategies – seat belts, helmets and the like – have reduced the pool of potential donors, who, not surprisingly, are disproportionately young and male. And so the focus of the donor program is early identification and referral, as well as “yield,” meaning the number of organs recovered per donor, which has risen in Ontario from an average of 3.5 to 3.75.

On the other side there are the lists of eligible recipients – people waiting for a kidney, a lung, a heart. They are ranked in order of priority; the sickest people come first. This week there were 1,703 people on Ontario's lists. Every three days, somebody dies waiting.

Scott Skinner is director of hospital programs for the Trillium Network. He deals in the cold arithmetic of numbers and statistics. But he has also worked with donor families, guiding them through the worst day of their lives toward decisions that will mean life – or death – for others.

“It's very high stakes,” he says. “We have to support the family but also advocate for all the people who aren't in this conversation.”

“Organ and tissue coordinator” is a dry name for the extraordinary nurses who work with families like the Serbas. They must be grief counsellors, educators and clinicians all in one. Part of their job is to help a family make meaning from a death. They are the link between one life and another.

The family must have time and room to grieve. But time is short. Organs deteriorate. After consent is granted, potential recipients must be matched and notified, surgical teams assembled and operating-room time found for organ recovery and for transplantation.

Some recipients may be at the other end of the country. Ontario shares its heart-transplant list throughout Canada and North America. If no suitable match is found close by, or if the most urgent case is in Edmonton, the organ will be transferred by air ambulance. The success rate will be highest if the organs are transplanted within 24 hours.

Last year there were around 150 heart transplants in Canada. Heather Ross's unit did 35 of them. If more hearts were available, she could save more people. “Heart failure is an epidemic,” she says. “The last thing we want is for a good heart not to be transplanted.”

For people in need of a transplant, the hardest part is the waiting. Their old lives fall away, and all semblance of control crumbles. Some must move so they can be near a transplant centre.

“I have a couple from rural Newfoundland who'd never been in an elevator before,” says Sarah Greenwood, a nurse-psychologist with Toronto General's Multi Organ Transplant Team. Another patient, a woman in her 20s from a small town, has moved to Toronto all alone.

Ms. Greenwood, who has an open manner and cropped blonde hair, instantly inspires trust. People tell her of their shame about feeling like a burden, of their fear, their anxiety and their sadness. “Your world goes like this,” she says, squashing her hands together into a little ball. “Your life boils down to tests.” Tests and waiting. “If it's a heart, you never know when.”

For many people, receiving a transplant triggers a transformation. They want to make something of their second chance. “People will often make quite profound changes in their life,” she says. “They re-examine their spiritual beliefs and patterns, how they're living. Maybe they re-engage with the family. They want to know how to live with integrity.” Other families can't withstand the stress, and fall apart.

Transplant patients have powerful feelings about the donors. There's gratitude for a gift that can never be repaid. There's also guilt that someone had to die so they could live. People waiting for an organ sometimes confess with shame that they eagerly tune into the news on a long weekend. They want to hear about the car crashes.

Plugging in

Because of David Prince's blood type (A), his wait for a new heart would be relatively short – between three and six months. Type Os, who are harder to match, typically wait one to two years. But even with the best hospital care in the world, David's risk of dying was 5 to 10 per cent per week. His organs were steadily deteriorating. Even if he survived long enough to get a heart, he could be a cardiac cripple with a short life expectancy.

Today, however, there is something they can do. They can implant a mechanical heart. It sits just above your stomach and is attached to a tube that connects to a battery pack outside your body. It keeps blood flowing and allows the rest of your body to recover, or at least not fail, while waiting for a transplant.

David was implanted with one a few days after he went into the Toronto hospital. The cost – around $75,000 – isn't funded by government, so it is paid through private philanthropy. Last winter, Heather Ross mounted an expedition to the Antarctic in order to raise corporate and individual donations. The idea was to scale Mt. Vincent, along with the fire fighter, David Shippam (who's become something of a transplant poster boy), and a few other intrepid souls.

They didn't quite make it; Mr. Shippam had to come to Dr. Ross's rescue when she got altitude sickness. But they raised over a million dollars – enough to buy a lot of mechanical hearts.

Three weeks after the device was implanted, David was discharged to go home and wait. Never a hefty man, he'd lost 20 per cent of his body weight and a great deal of muscle mass. The battery pack he wore over his shoulder felt terribly heavy. At night, he would take it off and Susan would plug him into a wall unit beside the bed.

“We sat looking at the phone and waiting for it to ring,” says Susan. “We looked at that phone the way my beagle looks at a bowl of kibble.”

Twenty-two days after David got home, it finally rang. As the nurses prepped her husband for surgery, they told Susan that he was getting a very, very good heart.

A complicated bond

Anonymity is an especially sensitive topic in organ donation. Donor and recipient families are encouraged to write to each other, but the letters go through the Trillium Network, where identifying details are removed. Valerie Serba isn't supposed to know who got Michael's heart, and David and Susan aren't supposed to know who donated his. There are too many opportunities for emotional complications.

Still, there's often intense curiosity on both sides. Some recipients scour death notices to see which ones have mentioned organ donations. Sometimes there's a tragic story in the news (such as Michael's) that make it easy to guess.

Valerie Serba often thinks about the people Michael saved. It's their lives that give meaning to his death. Part of him lives on in them. “I'll always miss my Michael,” she says. “But knowing he's helped others – what more could a mother want?” Every so often she phones her organ co-ordinator to ask how the four recipients are doing. So far they're all doing fine.

On her neck is a simple gold chain with a rose-colored, heart-shaped pendant that she wears in memory of her son.

A life resumed

Seven weeks after his transplant, David is at home, sitting in the sun on the deck of his midtown Toronto house. On the kitchen table is a list of all the pills he has to take – 30 a day. He is gaunt and pale. He's getting his strength back fast, but he still tires easily.

When I ask him if he's curious about the donor, he says no. He doesn't want to think about it now. “Thinking about the donor upsets him quite a lot,” says Susan.

Instead he is entirely focused on recovery. He has told Heather Ross that his goal is to swing a golf club again as soon as possible. Last week Susan took him to the Mini-Putt, and they played 18 holes.

And they must still complete the journey that began with the trip to Brazil – the one in which they were going to sort out their harried, overscheduled, work-obsessed lives and rebalance their priorities. It has been far longer and more gruelling than they possibly could have imagined. Some day they'll pick up the threads of their work lives. But Susan knows things will be different.

“We've been given an opportunity,” she says. “If our life goes back to the way it was, I'd be profoundly disappointed.”

She is deeply touched by the kindness and generosity of the many, many people who have helped them through their ordeal. She has been working on a letter to the donor family. She wants to thank them for the gift of her husband.

Margaret Wente is a columnist and feature writer for The Globe and Mail.

Join the Discussion:

Sorted by: Oldest first
  • Newest to Oldest
  • Oldest to Newest
  • Most thumbs-up

Latest Comments

Most Popular in The Globe and Mail