Mending a broken heart

THE YOUNG man on the table lies as still as death. His chest has been carved open and the great red cavity within – a sphere the size of a soccer ball – is empty. His lungs flop, spent balloons, against the sides of his rib cage. The only signs of life are mechanical; the blips and wiggles of monitors and the swish of the heart-lung machine that is oxygenating his blood.

A nurse takes away his severed heart – a huge, flabby, near-useless thing – in a clear plastic bag, the way you’d take a goldfish home from the pet shop. She delivers it to two research pathologists waiting next door. They turn the slippery lump of meat over in their hands and remark on its features like art collectors evaluating a curio. For the man on the table, John McLaughlan, it is the point of no return. No matter what happens in the next few hours, his sick old heart cannot go back in his chest.

He is 29. He was 26 when he first discovered he was ill, in January 1995. Woke up one morning coughing blood and struggling to breathe. Thought he must have caught a bug from the air-conditioning of the Queensland resort hotel he was working in. A doctor told him he had a virus, a lung infection maybe, and would get over it in a few days with the help of antibiotics. In a few days he was dying. Tests showed that his aortic valve was leaking badly. He was choking on his own fluids because the weak flutters of his grossly enlarged heart could no longer clear his congested lungs.

The Queensland cardiologist thought he had 6 weeks to live. By day seven, McLaughlan was back in Melbourne for open-heart surgery to replace the aortic valve and repair his aorta. For many heart patients that would have been the end of the drama. For McLaughlan, it was just the beginning.

Now he lies in the Alfred Hospital waiting for a new heart. Medicine’s cutters are rarely known for their people skills, but it seemed odd that his surgeon, Don Esmore, did not talk to him in theatre before he was anaesthetised. Esmore hovered out of McLaughlan’s sight, reading his file, chewing gum, barking at anyone foolish enough to ask him how he is at this late hour. “Tired!” he snapped. “I’ve already done 10 open-heart surgeries this week and I’ve got three on tomorrow.”

McLaughlan wouldn’t have worried even if he had heard. Esmore is renowned for his ability to function brilliantly on no sleep. Hours later, an obvious explanation for the surgeon’s distance presents itself. Esmore is methodically slicing away the last strands of tissue that connect this living, beating heart to its young owner. And he does not know whether the replacement heart will start up in its new home. He never knows.

John McLaughlan was his family’s changeling child. They are short and stocky, he is long and lean, with an armspan wider than he is tall. When he was younger, he had an operation to remove a bone from his pigeon chest and another to reconstruct his abnormally long jaw. If his doctors had been on the ball then, they would have realised that all his problems were due to Marfan syndrome, a congenital connective tissue disorder whose sufferers have distinctive physical characteristics. But they weren’t, and McLaughlan went on to develop an aortic problem common with Marfan’s. By the time it was corrected in that first bout of open-heart surgery, his heart had been irreversibly damaged.

It left him an invalid. When he returned from hospital, he did not have the energy or the oxygen even to walk from one end of his parents’ house to the other. Like the Elephant Man, he could not lie down to sleep. “I’d feel like I was suffocating, like I was about to drown,” he says. “I used to bang the walls with frustration. All I wanted to do was sleep, just to lie down and have a decent couple of hours sleep …” It was nearly as exhausting for his mother, Laraine, who spent night after night up with her youngest, her baby, while he struggled for air, urging him to “Breathe, John, breathe …!”

A few months later his life became more bearable when he was fitted with a mobile heart pump. It sat on his torso, the size of a small cassette player, with a tube snaking up to his right nipple and into the main artery serving the heart. It infused him with a drug that stimulated his body’s weakening pump into action. At the time of our first interview, in March 1996, it was his lifeline. “Twenty years ago, I would have been dead by now,” he said, grateful for that.

Instead, he was entombed by his illness. His world had shrunk to his parents’ house the way a prisoner’s does to his cell. “I still feel short of breath. I’m not allowed to work, I can’t drive a car in case I black out, and I can’t go more than an hour from Melbourne. I’m not allowed out on my own. I can’t go out in the sun too much because some of the drugs I’m on make my skin burn easily. I’m on fluid restrictions, and there are lots of things I’m not allowed to eat. I can’t read much because I can’t concentrate. If I walk half-way up the street, I’m exhausted.” Bad as this was, the prognosis was worse. Someone had to die if he was to live.

McLaughlan never wrestled with any doubts about whether to accept a donor heart. He knew he wanted to live. But at times he found the thought almost shocking. “Sometimes I think, ‘Oh God, I’m going to have someone else’s heart in my body!’ I just wish there was another way that it could be done. It’s pretty depressing to think that you have to sit around waiting for someone else to die for you to live. You think about the other person’s parents and their families, and how their misfortune is my fortune.”

Terminally ill people often ask, “Why me?” For McLaughlan the question took a different turn. Instead of “Why should this have happened to me?” it was, “Why should I to be saved?” Benefiting from another’s death imposed a moral burden: “Sometimes I feel that I have to prove myself to get the gift of life; to prove that I am a worthy person, that I’ll be a worthy member of society after the transplant.

“I do think that all this has made me stronger. I’m much more patient now. Not about little things, like waiting for a lift, but big things.”
But questions about some of the big things made him uneasy. Most twenty-somethings are not forced to confront their mortality. What had that been like for him? Did he have any religious belief? He moved uncomfortably. The answer did not come readily. He was accustomed to forcing himself not to think of his dread. He had come to the view that a good patient tries to keep his spirits up, tries to preserve his sanity during the long, uncertain wait for a donor.

Finally, he said, “I like to believe lately that you come back; reincarnation.” He chuckled nervously. “I don’t want to die. I don’t want to think about death.” Then, almost pleadingly, “My hope is for a transplant, not to come back as another person.”
BY 10.45 on this spring night, McLaughlan is on the operating table. He had thought his greatest fear was not getting a heart, but now that the moment has come, after two-and-a-half years of waiting, he shakes with a different dread. His old heart, that wretched murderous heart, pounds visibly under the yellow cotton blanket. A mellow Creedence Clearwater strums in the background, Rollin’, rollin’, rollin’ on the river

His parents had stayed with him until he was wheeled into theatre. Everyone was brave for the sake of everyone else. McLaughlan hugged and kissed his father, Don. His mother said briefly, “Love you.” John assured her, “You too, Mum. Everything’s going to be all right.” The trolley began to move and Laraine folded her arms across her chest, holding tight; Don pressed his mouth with both hands. Laraine waved a final goodbye, smiling, then turned away, her mouth trembling.

Esmore expects the operation to be complex. “It’s a re-do. He’s already had surgery, so getting through the previous scarring and adhesions will take a while. He’s not a standard case. He’s waited a long time, he’s got a defibrillator, he’s a marphanoid. It’s only two years since his last op and it’s safer if it’s at least five years. And he has an abnormal aorta; he’ll have most of the aorta replaced tonight.” The surgeon’s impatience is growing. “The organ is almost here and we haven’t started . . . They deteriorate over time, which creates a psychological pressure to get moving.”
McLaughlan is awake for some of the prepping. Arterial and venous lines are inserted into his arms to monitor his blood gases. A catheter measures pressures within the heart. Now the black anaesthetic mask is over his face. “I’m feeling jittery,” he mumbles. “That’s all right,” says Anne Griffiths, transplant co-ordinator, holding his hand.

She leaves the minute he is unconscious. A nurse whips the blanket off. McLaughlan lies naked, intensely human and utterly vulnerable in this stark, harshly lit space. His is the only bare flesh in this room of gowned and masked figures, and it is so bare. But no one so much as glances at him except for those who must work on him. One doctor bends over his groin to insert a catheter into his penis. Another slides tubing down his mouth. A cloth is draped over his genitals. His chest and stomach are shaved and his eyes taped closed.
Green cloth is draped on frames to cover his face and the rest of his body until only his torso, covered in clear plastic sheets impregnated with iodine, lies exposed. The transformation from person to surgical subject is complete.

Esmore begins the incision with a scalpel and then switches to the electrical current of diathermy because it seals the blood vessels, minimising bleeding. A long, fine needle with a spark at the end brings sizzling and smoke and the smell of singed meat. The 30-centimetre incision parts the flesh and reveals bubbly layers of pink foam: fat.

Then comes the breastbone, which must be sliced down the middle and held open with a rib-spreader. Esmore uses a saw with a small serrated blade. It is louder than a dentist’s drill. Blood spatters over his gloves and the green drapes. A second surgeon wields a suction tube that makes slurping noises. The iodine sheeting is now awash. Esmore grabs a sterile cloth and wipes it down as if he were using a teatowel on a kitchen bench. Behind us, Tina Turner belts out Simply the best . . .

Esmore uses pliers to cut through the wires that have held McLaughlan’s breastbone together since his previous surgery, then forceps to pull them out. He moves with great care in case McLaughlan’s scarring has left the heart stuck to the underside of the bone.

By 11.34, the sternum is split. It is hard to work with because of his previous surgery for pigeon chest. “Absolute pain in the bloody arse,” curses Esmore, giving his chewing gum a vigorous pounding. By 11.42, the opening reveals a sac of white scar tissue around the heart. It looks like the film that connects raw chicken fillet to the surrounding skin. McLaughlan’s head moves under the drapes as the doctors’ hands move in his chest, even though Esmore snips away painstakingly slowly, “to avoid unnecessary complications”, explains an anaesthetist. “Like death!” says Esmore drily. He rubs an itchy nose against the cradle holding McLaughlan’s drapes.

Retractors haul the rib cage open, and there it is: the heart. It would be an unremarkable, graceless lump of flesh were it not for its extraordinary rhythmic pounding . . . baboom, baboom, baboom. The rhythm of life. It begins on one side and flows into an answering contraction on the other, like the swing of a saucy woman’s hips. The sight is as dramatic as childbirth. It is life at its most basic; raw, and bloody, and beautiful.
McLaughlan has been receiving an anti-clotting agent so that his blood won’t clog the tubing of the heart-lung machine. By 12.25, he is off the ventilator and on the bypass machine. Dark red liquid runs through two thick tubes out of his body and into the machine that will keep him alive for the next three hours. On one side, theatre sisters hang up bloody swabs like washing on a line and Simon and Garfunkel offer themselves as a Bridge over troubled water . . .

The new heart has been sitting in a small foam food cooler. It is hard to believe the old heart is inadequate; it is enormous. But it is so big because it has worked so hard, so ineffectively, for so long that it has stretched under the pressure, like elastic that has lost its snap. The new heart is firm and lumpy, with pockets of yellow fat, looking for all the world like a small Sunday roast. The team discuss the age of the donor, who was relatively young. What causes a sudden death at that age? “Cerebral haemorrhage?” suggests an anaesthetist. “Car smash?”

At 1.14, Esmore lifts the sagging lump out of McLaughlan’s chest. Then he works in a bowl of bloody water to trim the new heart to size. At 1.29, it goes into the empty chest. Esmore begins long-distance sewing with forceps that hold the curved needle and thread and tweezers that capture the thread as it is pulled through. Forty minutes later the heart-lung machine begins to warm McLaughlan’s blood, which has been running through tubes sitting in ice. Cool bodies need less oxygen. There’s not a cloud in the sky . . .

THE OPERATING table is adjusted so McLaughlan’s head is lower than his heart. It is about to be filled with blood, and any air that might be in the new heart must be prevented from reaching the brain. Now the bubbles will float safely upwards and spurt out, like the spouting of a whale, through a hollow tube called a cannula. At 2.17, as Esmore continues to stitch, the heart sputters, unprompted, into a mad tarantella – into life. To the medicos, it is spontaneous return of electrical function; to anyone else, it is resurrection.

Esmore must still use a defibrillator to regularise the beat and is pleased that it contracts with a big kick. Then he hands over to the assisting surgeons to install McLaughlin’s pacemaker, which will be wired to sit outside his body in case he needs help in the hours after the operation. Esmore finds a chair and sags into it, suddenly looking as tired as he must feel. He allows himself the luxury of a yawn. “It’s a lovely rate,” he says, with the quiet satisfaction of a mechanic admiring the purr of a newly tuned engine.

Later, he explains, “The thing that really screws you up is when the heart doesn’t work. We can stand here for hours at this stage and we can’t get them off the operating table and they die because the new heart just hasn’t taken over.”

The assisting surgeons partially close the huge wound and then open it again to check for bleeding. By now the two lungs are filling, surging towards each other over the top of the heart as McLaughlan inhales with the help of the ventilator. Then comes a truly gruesome stage. The surgeon weaves thick wire up one side of the sternum and then the other, pushing hard to force it through the ribs. Then he pulls the two strands together, twisting and snipping as he goes, to unite the bone. By 4.07, the chest is closed.

An hour later, McLaughlan’s parents glimpse him on the trolley as staff speed him into intensive care. Don says, “There’s our boy. There he goes.” Laraine says, with relief, “It’s a gift. The gift of life.”

The drama didn’t end there. Things went well at first. By day three, McLaughlan was on a high. He sat up in a chair like a spaceman, with tubes snaking in and out of his body, and his mother and father sat gazing at him with wonder and pride and relief, like the parents of a newborn babe. “I feel perfect,” he said exultantly. “Dr Esmore came to see me and said, ‘Oh, you’re dangerous now’!” He grinned, chuffed at the very idea, then sobered. “I’m not meant to die.”

But he came close. It was six weeks and three more bouts of surgery before he went home. His wound developed a massive staph infection. Staff milked a litre-and-a-half of pus out of his chest. He had two operations to clean up the infection, the second removing part of his breastbone. Doctors left the wound open so that they could watch it and, with nothing but a gauze dressing between his innards and the world, his chest wobbled like jelly on a plate. The fourth operation cut a muscle flap from his abdomen and positioned it where his sternum used to be. Said Laraine, with sturdy humor, “He should have had a zipper put in.”

McLaughlan will never be just like everyone else. For the rest of his life he must take drugs that will suppress rejection by repressing his immune system. He will be sensitive to sunlight and will have other minor physical problems. But he’s walking four kilometres a day and cycling five, helping with the household chores, and planning to be back at work by the middle of next year.

“Sometimes I feel sad for the donor’s family,” he says. “I often wonder what the donor looked like, what he used to do. I would like to meet the family, but that’s an impossibility. We spoke (at the transplant clinic) about writing letters to them, and they reckon a good time is close to the anniversary. Now is too soon, for me and for the donor family.”

There are other ways in which McLaughlan’s life will never be the same. “I approach everything differently. Every day is a bonus. I appreciate being able to breathe, being able to walk, being alive to see my nephews grow up.” The beat goes on . . .

GIVE-AND-TAKE ATTITUDE

‘PEOPLE who become organ donors are not ill,” says Bette Martyn, senior Victorian transplant coordinator. “They are people who go out in the morning – to school, to work, to recreation – and don’t come home in the afternoon. They don’t have a chance to say goodbye to their families. They are all sudden, tragic deaths.

“Most times, the people close to them say to me, ‘It’s all so senseless’. Organ donation can offer some sense of purpose. It’s not for everybody; if a family doesn’t feel comfortable when first approached about it, they should never be talked into it.

“That’s one of the reasons we set up the organ donor registry, so that people can make up their own minds and inform their families, so that if their relatives are ever faced with that decision in intensive care, they know how to respond. It isn’t their decision.

“When we first started transplanting, we got quite a lot of refusals. The two things people said ‘No’ to were the eyes, because of a sense that they have to see where they are going, and the hearts, because of a sense that that’s where the soul is.

“Other people can come to terms with organ donation if it’s going to be used for a transplant, but they don’t want it used for research. In fact, we are not able to use tissues for research unless we get specific consent for that.

“You can donate heart, lungs, liver, kidney, pancreas, cornea, skin, bone and heart valves. You can be 140 and die in bed and still donate your corneas and give sight to the blind. It’s the ultimate in recycling.”

Victoria’s organ donor register has 23,000 names; it needs more than 250,000 to cater for the need. Martyn is on the register. So is the rest of her family, including her baby grandson.

* The Organ Donor Registry can be contacted on 1800 645 899.

First published in The Age.