How to win at cystic fibrosis

Posted on May 22, 2011


While a nurse administers no less than five huge injections to his tiny 130cm frame, 13-year-old Coen Ashton chats to me, not about his debilitating illness, but about his girl troubles.

He’s sitting up in his hospital bed after another six week stay – a ‘tune up’ as Coen puts it – fiddling with his nurse’s bracelet and lamenting the fact that he can’t hold down a relationship for more than a few months at a time.

“It’s hard you know, I’m a great flirt, I flirt all the time and I’m not shy by any means,” he says.

“It’s just that every time I go into hospital and don’t see [the girl] for six weeks, they take off, so I have to go out and find another one.

“Put in your article that I’m single, ok?”

The pint-sized teenager was diagnosed with cystic fibrosis as a newborn and is waiting for a life-saving double lung transplant.

To help speed things along, he decided to ride a jet ski down the entire length of the Murray River to raise awareness about organ donation.

The journey took seven weeks to complete and along the way he managed to sign up more than 1000 new donors.

“Those new organ donors will save 10,000 lives,” he said.

“Sometimes people get squirmy about organ donation, but they shouldn’t. Organs are only ever used to help people like me.”

Given that 1500 people died in South Australia waiting for kidney transplants in 2008, you can understand his point-of-view.

That morning, Coen’s lung function measures only 34.3%, he has two hours of physiotherapy ahead of him and has to have frequent antibiotic and insulin injections.

Despite this, Coen is rosy-cheeked and upbeat.

“I live by a little saying: What doesn’t kill you only makes you stronger’,” he said.

“Hopefully this doesn’t kill me. In fact, it’s more likely that a common cold or flu will kill me.

“I sort of need bad lung function so there is more chance of me getting a transplant.

“But if I can, I need to hold off until I’m a bit older.  I can really only have kid lungs unless the adult is about the same size as me, but that’s not really very likely now, is it?”

Coen shares about how he has good days and bad days, and about how when he’s tired he gets grumpy with his mum over who mixes up his complicated cocktail of intravenous antibiotics and about how he can’t run around with his mates.

“I’m flat out just walking, so when my parents tell me to go outside and play I don’t really see the point,” he said.

“I couldn’t run to the end of this room, let alone outside.

“But I’ve lived with this my whole life, so you just get on with it.  I have a couple of really close friends, but because I’m in hospital I don’t get to see them very much.”

To get around his pesky lung function, Coen has developed a passion for motor sports.

“Engines let me go faster than my body could even if I was healthy,” he said.

“Why run when you can Jet Ski? Why ride a pushbike when you can ride a motorbike?”

Coen and his parents live in Maryborough, Queensland, but he would have to have a transplant at The Alfred in Melbourne if his situation deteriorates and a donor is found.

When I ask what keeps him going, he is matter-of-fact.

“You just keep pushing on,” he said.

“There’s no point being miserable or feeling sorry for yourself, you just have to get on with it.

“That’s what I’d say to anyone having a hard time.  Just push on and you’ll be alright.”

Coen was inspired by teen sailor, Jessica Watson, to push his body and lungs to the limit.

“I’m hopefully going to get a lung transplant after this anyway, so I might as well wear these ones out,” he said.

“Why send them back with still 34 per cent life in them?”