'Many things worse than death': One man's story of cruel luck and courage

Dylan Cleaver
By
Dylan Cleaver

Sports Editor at Large

Not all sporting lives are created equal.

In Shane Gibson's case, his was created less equally than most.

In an alternate universe, the 42-year-old Aucklander would have carved out a career as winger marauding up and down the sidelines of a football field. Maybe if he'd been a bit taller, if he hadn't topped out at about 60kg, he would have contemplated rugby.

At the very least he might have followed in the footsteps of his grandpa George, who followed Arthur Lydiard home in second in the national marathon champs, and his dad John who was also a competitive runner.

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Shane showed promise too, winning a couple of primary school cross country events, but he never got a chance to fulfil his potential.

Sport might have been the thing in life that gave young Shane the most pleasure, but life had other plans for him.

The first sign that things were going to roll a little differently came in 1984. It's a year forever associated with Orwell's dystopian 'future' but at that point the Gibsons would have taken any future at all for their son.

The seven-year-old was playing up at his west Auckland home and got a wee tap on the bum from his dad. A bunch of hive-like spots appeared and refused to go quietly. Shane was diagnosed with aplastic anaemia, an insidious autoimmune disease. His bone marrow lacked the stem cells to enable reproduction of blood cells.

If the diagnosis was bad, the prognosis was worse. The Gibsons were told their eldest child had about six months to live.

They vowed to make it the best six months of Shane's short life. They took a second mortgage on the Mt Roskill family home and flew east. Shane went to Disneyland. He went to the Grand Canyon.

Six months came and went. Monthly blood transfusions seemed to be doing the trick. Improbably, his health seemed to be improving, not deteriorating. Shane went back to school. A public health nurse talked to the assembly: Shane couldn't play with the other kids – bumps or cuts could have serious consequences. Instead he would toddle off to the library.

By the age of nine, he'd worked his way through Wilbur Smith's anthology. He didn't consider himself different even though the last thing most kids saw before the light went out wasn't their mum attaching a butterfly clip to a hole in your stomach so you could receive an overnight iron infusion.

These were the days of relative stability before it all went "downhill rather quickly" in 1988.

His blood counts were not responding to the transfusions and it turns out he didn't have aplastic anaemia after all. Shane had myelodysplastic syndrome, a cancer that prevents blood cells maturing. The symptoms were similar but the prognosis differed slightly in that it gave him opportunity – if a match could be found for a bone marrow transplant.

John had been tested, as had mum Lynette and his sister Joanne. None of the numbers quite matched up. It was not their fault, of course, but it was tough to swallow. In 1985, however, a new brother had come along and Jarrod's bloods matched up perfectly.

A bone marrow transplant is brutal on the donor and recipient. Shane, by now 11, was used to intrusive medical intervention but this was off the scale. To give the new marrow a chance to take, they had to kill off all the old stuff with chemotherapy and "a radiation bomb".

All his hair fell out but vanity was the least of his woes. To ward off potential infection that would likely kill him in his weakened state, Shane spent three months in isolation.

Sport came to his rescue.

Lawn bowler Shane Gibson says he is "no Peter Belliss". Photo / Brett Phibbs
Lawn bowler Shane Gibson says he is "no Peter Belliss". Photo / Brett Phibbs

A borrowed TV and the Seoul Olympics kept him sane and gradually people came drifting back into his life. His dad and grandpa invented games for him. A taped up old newspaper worked as a bat so they could play floor cricket.

On a cocktail of anti-rejection drugs, he started to make the odd home visit. His marrow started producing blood cells. It should have been happy days but he developed a random sleeping disease. He woke up alone in hospital on Christmas Day.

Form 2 was a shocker he'd rather forget. He'd missed most of his first year at intermediate so although his health had stabilised, his social life was complicated. His old primary school friends had grown up and were moving on. Shane, however, wasn't growing at all.

The radiation and chemotherapeutic drugs had damaged his pituitary and thyroid glands. To accelerate his development he was put on EPO, HGH and testosterone. The EPO was interesting. It came in a single-use package but Shane could only use a small amount of it. His dad joked about how fast he might be able to run if he took the balance.

Gibson entered Lynfield College just pleased to be able to kiss intermediate goodbye. He left with a B bursary and an idea that he'd like to work in sports management.

His love for sport continued. He devoured it, just couldn't play it. Then he went to Birkenhead and delivered his first bowl. It swerved right when it should have gone left but it didn't matter – he had already fallen head over heels in love with the game.

After a couple of academic detours, he made his way to Otago University to study for a PhD. He joined the legendary North East Valley club, the home of the Scotts, Terry and Stu.

Shane loved the club and he loved university life. Every morning he'd wake up in his flat and wander down to the campus. Until one day when he woke and couldn't muster the energy for the walk. He couldn't muster the energy for anything and that pain in his right shoulder was intensifying.

A flatmate drove him to A&E. He was hooked up to an ECG and although the hospital was just 100m away, an ambulance arrived to take him.

A cardiologist unaware of his history told him he likely had a virus affecting his heart function and that he'd need to come in for an angiogram when it was next available in three or four days. Fifteen minutes later he returned to Shane's room.

"We're doing that angiogram right now," he said.

Three arteries were blocked, two at 90 per cent, one at 95. His creatinine numbers – which measure kidney function – were diabolical.

Shane had his arteries stented, left the hospital and had another heart attack a few days later. He saw a renal specialist who told him he'd need a kidney transplant.

All the optimism drained from him. It was like his battery had gone from 70 per cent to low power mode in an instant. He rang his dad and had a difficult conversation.

He told him he'd "had enough".

John got on the next flight and brought his son home as 2002 wound down. The PhD would remain unfinished.

Back in Auckland, back with family, things picked up again. He worked first as a tutor in sports management and marketing at Unitec, then got a job with Bowls New Zealand as a development manager.

He played bowls as often as he could. Sometimes it was more difficult than others.

Between 2002 and 2005 he suffered 10 or 11 heart attacks, each one a bit different from the last. He carried (and still does) Nitrolingual spray everywhere with him so when he recognised the symptoms he'd squirt some under his tongue to open up his blood vessels.

Sometimes the spray was like fighting a bush fire with a garden hose.

He took a lot of sick days. He wishes he'd been upfront about his medical history with Bowls NZ. As the sickies mounted he started feeling a chain dragging down the organisation. He resigned at the end of 2004.

Shane doesn't have time for a lot of regrets. That is one.

A few months later, in the New Year, Shane had "a big one". The wrong ambulance, the one without the defibrillator, turned up. They took him to the wrong hospital. Who knows if that contributed to what happened next but whatever it was it could also be filed under "not good".

It was two or three days after the attack. Jarrod, his brother and bone marrow donor, was visiting.

Shane fell over.

He doesn't remember it. Doesn't remember the panic buttons ringing throughout the ward, doesn't remember nurses running from hither and yon. Doesn't remember being taken to the ICU and placed in critical care. Doesn't remember his kidneys shutting down.

Doesn't remember his extended family gathering at his bedside being told that it was unlikely he would see out the night.

What he does remember is opening his eyes, feeling the warmth of the sun on his face and seeing brilliant blue sky about him as he was being transferred between wards. "Life is good," he thought, none the wiser as to how close he came to losing it.

He recovered enough to start playing bowls again, but he was tired and unusually listless. His kidneys, to use the correct terminology, were completely munted.

So began 18 months of dialysis. Every Monday, Wednesday and Friday he would go to the renal clinic and wait while his blood was washed for six long, long hours.

The relentlessness of it crushed Shane. He'd already been through more medical intervention than 99 per cent of the population endure in a lifetime, but he still views those 18 months as "the worst experience of my life". He met people who just gave up, stopped the dialysis, died.

Shane didn't have a death wish but he understood it.

He entered a twilight zone. He needed a kidney transplant but they could not perform one because his heart was too sick. He didn't qualify for a heart transplant because although it was functioning at only 17-18 per cent, it was not quite sick enough.

His health continued to deteriorate. He had to stop playing bowls, the one thing that had got him out of bed in the mornings.

He "wished" for another heart attack so it would further damage his pump and necessitate him getting a new one.

Halfway through 2007, he got his wish.

It was duly stented but this time Gibson forgot to pick up his prescription for Clopidogrel, a blood thinner.

While he was sitting in his dialysis chair, he had another attack. As Lynette was driving in to pick him up, the ambulance was tearing out the other way. She instinctively knew who would be in it.

Shane Gibson's angiogram in January delivered only bad news. Photo / supplied
Shane Gibson's angiogram in January delivered only bad news. Photo / supplied

This attack pushed his heart beyond the point of no return. He literally could no longer climb a flight of stairs.

Shane was placed on the list for a heart-kidney transplant but the doctor warned him it would not be a simple procedure. The radiation he had as a kid had left lesions all over his chest wall. If any ruptured he could bleed out.

Shane made the list on a Friday. On Sunday week he took a call.

"Shane, we have a heart for you."

He drove to hospital for preparation that night. At 7am on Monday morning they took his irreparably damaged pump out and replaced it with a new one. They waited a short while to see how his body reacted then they swapped out his kidneys, making him the fifth recipient in New Zealand of a heart-kidney transplant.

For a guy who never caught a break, this went remarkably well. After 10 days he was out of hospital. He had one last dialysis to endure while his new kidneys bedded in and then, for the first time in 18 months, he needed a wee.

It felt good.

Shane doesn't get good news in long strings though. You should know this by now. A short while later his back hurts so much he can do nothing except call his parents to get him to A&E.

It's a superbug, of course.

Back to hospital, back into a critical unit. His new heart and kidneys were vulnerable. Doctors suspected they would not cope. He was fed by a tube and dropped to 35kg, which is about what an 11-year-old girl should weigh.

To the astonishment of everyone bar those who knew him best, he fought back again.

He started playing bowls again. He started winning a lot more than he lost.

With Birkenhead clubmate Rod Mahon he finished runners-up in the pairs at the 2009 New Zealand Open. He made the quarter-finals of the triples and the semis of the singles. He placed well at other big tournaments.

He couldn't work, but he could play bowls. So he did. All the time.

He was "living the dream".

A friend, Rhonda, suggested he try to meet someone online. So he did that, too. Went out to dinner a couple of times without feeling the spark, then he met Natalie Anderson in the middle of 2012 and knew she was the one. She was a nurse, which, truth be told, was useful.

Rod died of prostate cancer just before Christmas that year. Shane, who has not once shed a tear listing his own travails, cries when he recalls it.

Rod had been a huge part of his life – a good mate, good bowler and even better sounding board.

Shane struggled to walk into the club for a while. It wasn't the same, but at least he had Nat to talk to about life's vagaries.

They married in France in 2016 and travelled the country for four weeks.

Life was good, but he wasn't suddenly a stranger to hospitals. He had a gall bladder removed and has had several skin cancers cut out. It is from all the immunosuppressant drugs and radiation he had as a kid. Nothing "major" though, as he puts it.

He went back to bowls again, even managed the North Harbour rep team. He still loved the game, just not quite as much as when he had Rod on his team.

In January this year, he lost a final while playing in the North Harbour champs. It frustrated him more than it normally would. He went home to bed and woke up feeling strange, like there was a "dying fish flopping around in his chest".

Gibson went in for an angiogram. Those that do the tests know him well. They're usually a jocular bunch. This time there was no laughter.

He thought: "This is not good".

Life, he would discover, had a final cruel trick to play: transplant vasculopathy, an arterial disease that causes numerous blockages. They cannot be stented. He cannot receive another transplant. He is out of options.

Shane Gibson lives on blood thinners and takes some comfort that they still have a "bit of room to move" on those. Photo / Brett Phibbs
Shane Gibson lives on blood thinners and takes some comfort that they still have a "bit of room to move" on those. Photo / Brett Phibbs

They could not intervene surgically, his specialist Dr Peter Ruygrok said, but would treat it medically.

Shane asked the doctor if he should act with some urgency if there were still important things in life he wanted to do.

"Yes," came the reply.

Nat sent her friend, a heart specialist in Australia, Shane's angiogram in the hope there might be a Hail Mary option. He sent back a short reply.

"I'm really sorry."

It was a tough winter. Shane and Nat went to Taupo for three nights and to shoot photos of birds, a shared interest. He got endocarditis and pneumonia and anaemia. He "wasn't very well".

The family gathered… again.

Shane pulled through… again.

He lives day by day now. He can lose himself in a book, or the cricket on the telly, and forget for a while that he has a terminal illness.

A couple of weeks ago Shane went for a roll-up at the club. He enjoyed it.

He calls his condition a time-bomb. He lives on blood thinners and takes some comfort that they still have a "bit of room to move" on those.

When he feels sorry for himself, as he has every right to do, he can call back on all the times he's beaten the odds. It was 35 years ago, after all, that his parents remortgaged to with his bucket list in mind.

So no, Shane Gibson is not your average sportsman.

Life and a bad hand got in the way of that.

But he's a lawn bowler. Not a great one – "I'm no Peter Belliss" – but a bloody good one.

He got so close but never quite won a national championship, though he pulled off one of the greatest grassroots sports achievements you've never heard about. One weekend, in the midst of his dialysis hell, he won the Birkenhead singles champs. Eight matches across two days, all on less than two litres of fluid intake.

Shane is 42. He might not have been given the tools for an equal sporting life, but he's found comfort where others may not.

“I’ve been through so much and seen so much,” he says, “and one of the things I have come to realise is that there are so many things worse than death.”