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Marie-Ève and Danny Norris, both living with cystic fibrosis, on their wedding day with their dog, Steeler. (Retrieved from Facebook).

Waiting with bated breath

For Danny Norris, something as simple as a shower leaves him short of breath. On Friday, March 3, he’ll be driving to Toronto and take the first step to fix that—he’ll be signing onto a lung transplant list.

Casselman resident Norris, 26, was diagnosed with cystic fibrosis at six months. CF is fatal genetic disease that attacks the lungs and digestive system. Norris says his lungs are covered in a thick mucus that prevents him from breathing normally and makes him cough constantly. And he says the last four years he’s been getting worse. “I get hospitalized almost every month now.”

As we chat, his statements are punctuated by shallow breaths, making him sound like he just finished jogging.

Growing up, though, CF didn’t stop him from playing hockey, golfing or riding his ATV. “My lung function was around 80 per cent in my teen years, so I was able to keep up pretty well,” he says about playing hockey.  

Today he still plays broomball, but noticed he can’t quite keep up anymore. “My lung function now is anywhere between 20 and 30 per cent of a normal person my age.”

That decline and constant hospitalization got him thinking about a lung transplant. There was also another factor.

‘She understands everything completely’

Norris married his wife, Marie-Ève, in August last year. They grew up together, often seeing each other in the hospital.

Marie-Ève also has CF and four years ago, she had a double lung transplant.

In a funny coincidence, last time The Review spoke with Norris was in 2013, and he was in the hospital waiting for a potential operation to remove a damaged lobe from one of his lungs (that didn’t happen). At the time, he said he had a friend that had just gone through a transplant. “We started dating six months after that,” he says.

Since the operation, Norris says Marie-Ève’s lungs have been great. “She was basically on her last legs… she’s actually at 101 per cent for her lung function now.” It’s an intimate—if unusual—stat to know about your partner, but one that shows someone who doesn’t have CF may not fully understand what they have to live through.  

“There’s lots of different ups and downs that a regular person wouldn’t see,” says Norris. “She understands everything completely.”

To be clear, a lung transplant isn’t a cure. Since CF affects other organs, like the pancreas, these new lungs often have a chance of being infected as well, though much less severely. Though there’s still no cure, there has been progress: the median survival age has jumped to about 52-years old—about 20 years more than someone who had CF in 1990.

The Norris boys: Danny (left), Ricky (right) and their father, Rick (middle) in 2014. (Retrieved from Facebook).

On the list

Norris has already spent a month in Toronto being poked, prodded and tested to confirm his other organs are strong enough to withstand a transplant. Friday he drives back down to sign the papers and stay for another month.

“I have to do a strict physio schedule. I’ll be in the gym three or four times a week for an hour and a half, no matter how bad your lung function is. They want to keep your body strong to endure the surgery,” he says.  

There’s no way to predict how long the wait is once on the list. When Marie-Ève had the transplant, she had to live within two hours of the hospital in Toronto. Since then, though, new technology can keep potential lungs alive longer, which would allow Norris to wait for the call at home in Casselman—if he’s not too sick—something he says is both a relief emotionally and financially.

His brother Ricky started a GoFundMe page so people could donate towards some of the expenses associated with living in Toronto for several months after the surgery and follow-up appointments. People have donated nearly $15,000 in two days.

“It’s kinda left me speechless… I’m extremely grateful for everyone that’s helped donate,” he says.

When it comes signing on the dotted line, Norris says he’s split on how he feels. “I’m excited for the possibilities of what could happen afterwards, but I also am scared because a lung transplant is not a guaranteed success.” The five-year survival rate is about 66.7 per cent.

Seeing his wife Marie-Ève today, though, is a big motivator.

“She’s definitely been a great role model and a great teacher… We still haven’t been able to go on our honeymoon. I’d definitely like to go on that and enjoy life’s experiences again.”


Listen to our interview with Danny here.

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