A life for a life
the 30 years Kay Burnett never expected to live
When Kay Burnett needed new lungs three decades ago, she gave her heart away to another. She tells Nikki Macdonald, ShortForm Feature Writer of the Year, about her globally ground-breaking domino-donor transplant, and the 30 years she never expected to live.
As the ambulance pulled away from her Marton home, doubt crept into Kay Burnett’s mind: ‘‘I thought, God, I wonder if I’ll see this house again.’’ Her two daughters had already left: 9-year-old Melissa to stay with her uncle down south; 13-year-old Cherie to stay with friends. Her husband, Ian, flew with her to England, where she hoped to be among the first Kiwis to survive a heart-lung transplant.
The odds were barely better than even, but she soon banished the doubt and reckons it’s the only negative thought she’s allowed herself in the three decades since: ‘‘I thought to myself – don’t be bloody silly, of course you will.’’
Burnett not only became one of the first Kiwi heart-lung transplant survivors, but she is believed to be the world’s first successful domino-donor transplant patient.
‘‘My heart went to a Dutchman,’’ Burnett declares. She’s not talking about a covert love affair. She needed only replacement lungs, but at the time – 1987 – it was considered less risky to transplant the heart and lungs together. When British surgeons found her own heart remained in good condition, they re-plumbed it inside a 50-year-old Dutchman suffering from heart disease, making Burnett probably the first person to live while her heart beat in another body.
There was no time to ask her permission, but when she found out, she never felt weird about it. All that about your heart shaping your identity – ‘‘That’s a bloody lot of rubbish’’.
‘‘I was given life, and if I could give life to another person, so be it, I would.’’
Thirty years on from her May 9 transplant, Burnett is celebrating with champagne at Shed 5 restaurant on Wellington’s waterfront, surrounded by 26 of the people who have helped her reach this extraordinary milestone – friends, family, doctors, trust fundraisers.
To understand how she got here, and why it matters, there are things you need to know about Kay Burnett, and about 1987. The first is that 67-year-old Burnett’s wispy frame is deceptive – she’s as stubborn and bossy as they come.
Her current kidney specialist, Philip Matheson, sums it up: ‘‘Really, it’s a spectator sport – looking after Kay.’’
Burnett was 37 when she received her donor heart and lungs, from a 12-year-old girl killed in a road accident. She’d smoked briefly as a teenager but had long since stopped, but emphysema was steadily squeezing out her life breath.
In barely a year, she’d gone from active mother to barely mobile. She was five stone (32kg) when she had the transplant – ‘‘just skin and bone’’. She couldn’t bathe herself – when hot water hit her head, her lungs would seize. Melissa would wash in the hollows around her neck where the skin had sunk into her chest; Cherie would gently wash her hair.
She had a wheelchair, but refused to be seen out in it: ‘‘I’ve got queer beliefs, but if you give in to that sort of thing, you’ve had it.’’
So when the ward doctor suggested she’d be permanently wheelchair-bound, she was having none of it.
‘‘He said, ‘Well, what are you going to do?’. I said, ‘I’ll take my chances with the knife’. That was the exact words I used.’’
That was 1986, a year before New Zealand’s first heart transplant, at Green Lane in December 1987. Newspaper clippings are filled with Kiwis raising money to travel to Sydney or London to wait and hope.
Ann Crawford was New Zealand’s first heart-lung recipient – transplanted at Britain’s Harefield Hospital in July 1985. She died four years later, aged just 27. A tally of Kiwi patients who travelled overseas for heart or heart-lung transplants in 1986 found half died either before or soon after.
Still, Burnett figured it was worth a shot. Her respiratory specialist, Peter Martin, had worked with renowned Harefield surgeon Magdi Yacoub. ‘‘You realise you can’t just have lungs,’’ Martin told her.
‘‘I said, ‘Yeah, but I’m not going in a wheelchair’. I said, ‘What’s the point? There’s no life in that’.’’
Martin stayed up late arranging for Yacoub to see Burnett. ‘‘It seemed the only chance,’’ Martin recalls.
Then there was the question of getting there. Former Social Credit leader Bruce Beetham fronted a trust to rally the people of Marton, Whanganui and Palmerston North to raise $120,000. Dubbed ‘‘A Christmas Present for Kay’’, the fund opened on November 25, 1986 and closed on Christmas Day.
And soon Burnett was farewelling her daughters for nine months and jetting to England to await her fate. Cherie never feared her mother would not return.
‘‘You don’t comprehend the magnitude of it,’’ Melissa says. ‘‘I think it is not until you literally grow up and become a mother yourself that you understand. For her, receiving a child’s heart and lungs when she had children that age at home; never knowing if you were ever going to see your children again.’’
Burnett’s biggest worry was dying before the transplant. She had to go on life-support days before the surgery. She signed her own consent form, but has no memory of it.
‘‘I wasn’t frightened about having it done. I wondered if I’d live long enough to get it.’’
Sir Magdi Yacoub calls Burnett an outlier. One of the few who broke the statistics. The 81-year-old transplant surgery veteran speaks from Egypt, where he still teaches.
These days, Sir Magdi is a globally revered transplant pioneer. He has a professorship, a knighthood and a membership of the Queen’s exclusive Order of Merit.
But back then, as Burnett sat in a London flat awaiting her only hope at life, some were calling him a murderer.
It’s easy to forget that transplanting organs from braindead patients was once deeply polarising. ‘‘The hate was abundant,’’ Sir Magdi says. He won’t repeat the hate mail’s contents, but there was a lot of it – ‘‘a lot, a lot, a lot’’.
Critics said he was experimenting on people for fame. But that failed to understand the ‘‘holy relationship’’ between doctor and patient – ‘‘You want to help them. Somebody is asking you, I’m putting my life in your hands.’’
They said he was killing a living person to take their heart. ‘‘But the patient is not living. If my brain is dead – I’m not there.’’
Sir Magdi never questioned the ethics of taking from the dead to give life to the dying. But he certainly agonised over how to prioritise ever-scarce donor organs. There were no official guidelines, just the quest for a rational answer to a moral question. Which of his 170 waiting list patients was more deserving – the parent looking after a family; or the child who might have more years to gain.
‘‘That I found almost impossible . . . Who am I to act God? I’m not qualified to do that.’’
The domino-donor idea was born of Sir Magdi’s frustration at wasting useable hearts. At the time, lung transplants were technically risky – even today they have lower survival rates. But transplanting a heart and lung together ensured the pressure generated by the heart was matched exactly by the lung. It also ensured an instant blood supply, helping the windpipe heal immediately.
But for those, like Burnett, who needed only a new lung, that meant binning a potentially functioning heart. ‘‘We were very short of donor organs. We still are,’’ Sir Magdi says. ‘‘So I did not want to be sending it to the pathology department when I could be transplanting it.’’
And so domino-donor transplants were born. While the domino-donor hearts were compromised, having been subjected to high blood pressure from the lung, or pulmonary hypertension, he realised that could be an advantage. Heart patients with severe pulmonary hypertension could receive a heart preconditioned to that high pressure, which then normalises over time.
Burnett’s was not the first domino-donor transplant – that was undertaken by Sir Magdi 11 days earlier, on April 28. The heart-lung recipient survived; the heart recipient did not.
History now mostly says the first successful domino transplant was conducted in the United States, but contemporary news reports say Burnett’s transplant happened just hours earlier. Burnett was all over the British press, with The Sun once reporting her dead.
Who was first is not important, Sir Magdi insists. What matters is learning from people such as Burnett and Andrew Whitby – another Harefield patient, named the longest surviving heart-lung transplant recipient when his 30-year anniversary ticked over in 2015.
No-one knew how long a donor organ would last. ‘‘Our thinking was if we had 1-5 years, it was a massive bonus,’’ Sir Magdi says. ‘‘People like Kay have proven that you can break the boundaries. Thirty years – that would have been unimaginable at the time. That is an absolute delight.’’
Looking back, Sir Magdi sees no clear pattern to those who lived and those who died. His team carefully matched tissue types – but Burnett’s match wasn’t all that good.
In The End of the Beginning ,a 2008 paper in the American Journal of Transplantation, Sir Magdi reflected that only 12.5 per cent of heart transplant patients lived beyond 20 years.
New innovation is needed – to prevent rejection of the donated organ, without damaging immunosuppressant drugs.
‘‘With maturity comes responsibility: we ask the question, ‘Why did we lose so many?’ The answer is we have not developed. While it is a cause for massive celebration that people can survive long term, we need to work harder to make sure that more people like Kay can celebrate the joy of life for 30 years.’’
What does 30 years buy you? For Burnett, a return to work and her beloved hockey. Time to see her children grow up and to meet her three grandchildren – Cherie’s boy, Heath, and Melissa’s children, Daniella and Connor. Time to share with a husband who has been devoted to caring for her, and to grieve when he dies before her.
Two World Transplant Games, complete with bronze medal in the shotput. And in between the two tournaments, a kidney transplant after a complete loss of drive in the 100m sprint revealed the immunosuppressants preventing organ rejection had knackered her kidneys.
A bout of pneumonia; a wearying heart.
And through it all, the bloodyminded determination that Burnett – and others – credit with her survival.
Burnett points to her cranium: ‘‘I’m pretty stubborn. It’s the will, it’s the motivation of the mind. But you’ve got to have really good medical treatment, and then you’ve got to have the guts and determination to follow through.’’
Since the beginning, she’s set goals: 10 years; 20 years; 25, then 30. ‘‘Now I think it will be 32.’’
‘‘Health is No 1. I think – how long have I been on borrowed time? I would never have thought I’d have seen 67. It makes you really stop and think about life and what it is all about. You are not as invincible as you think you are. You think you just go on and on. Life isn’t like that at all.’’
Back at Shed 5, her nowretired specialists never doubted she’d make it this far. ‘‘She’s a strong personality,’’ says kidney specialist Peter Hatfield, who oversaw her kidney transplant recovery. ‘‘She was, right from the beginning, someone that could make it.’’ ‘‘You need character,’’ cardiologist Ron Easthope agrees with a laugh. ‘‘She’s indestructible.’’
She wasn’t though – indestructible, that is. After the double transplant, every time they tried to get her off the ventilator in intensive care, she fought it. With a tube down her throat she couldn’t speak so asked for a pen and paper. She still has her notes – they’re complete nonsense.
Recovery was damned difficult, like climbing a mountain. One step forward, three steps back. An infection, a setback.
And there were no absolutes. ‘‘You could live a week, you could live 10 days, you could live years like I have,’’ Burnett says. ‘‘You don’t know. Nobody knows. What you’ve got you’ve got and you have to live with it, simple as. Worrying’s not going to fix it.’’
Burnett could have met the man who got her heart, but at the time it seemed too much, and she didn’t want him to feel indebted to her for his life. No-one knows his fate. ‘‘I’ve regretted it.’’
She wants people to see the life her transplanted heart, lungs and kidneys have given her, in the hope they will consider being organ donors.
Ironically, 1987 was also the year New Zealand introduced an organ donation register – a driver’s licence tick-box. It was considered world-leading, but a later review found the information was largely unavailable to hospital staff. The choice can also be overridden by family – something Burnett disagrees with.
Thirty years later, the need for a legally-binding register remains a hot topic.
Burnett favours a system where everyone is assumed to be a donor, unless they specifically opt out. ‘‘I think it’s important that people think about it. I’m really thankful for my life. I never thought I’d get the 30 years I’ve got. It’s a great thing.
‘‘I can understand where people come from when they say, no, they don’t want to do it, but, hey, they’ve got to sit back and think, if my heart, lungs or kidneys fail, would I want to die? No, they wouldn’t. They’d want to live, wouldn’t they? It’s a natural instinct, to live.’’
‘‘Health is number one. I think – how long have I been on borrowed time? I would never have thought I’d have seen 67. It makes you really stop and think about life and what it is all about.’’