Newfoundland man with double-lung transplant waiting for another miracle

A Corner Brook man doesn't know whose lungs are now in his body, but he's certainly thankful that person had agreed to be an organ donor.

Scott Hanley breathes easier than he has in years, thanks to a double-lung transplant that doctors said was his only hope when he was diagnosed with a lung disease called idiopathic pulmonary fibrosis.

But Hanley's health troubles aren't over yet. He is now in need of another transplant, this time for a new kidney. His own kidneys have failed, leaving him on dialysis three times a week.

"I'm very anxious in the sense of just wanting to move forward with my life," Hanley told the Corner Brook Morning Show. 

"And the chance of getting off dialysis would be wonderful, of course."

Short of breath

The fact that Scott Hanley is alive at all is no small miracle, after several roller-coaster years in which he went from being occasionally short of breath to being on life support.

Hanley says the first time he realized something was wrong was while he was on a snowmobile trip in 2014.

"I noticed that I really had trouble walking in the deep snow, and very deep breaths and almost nauseous and sick feeling when I got back to my machine. So, that was the first clue."

Hanley was in his early 40s at the time and, up to that point, he had been a reasonably healthy man who had coached gymnastics and worked in a variety of jobs in forestry and as a truck driver.

Over time, he became short of breath whenever he exerted himself, and eventually even when he was doing day-to-day activities.

"He couldn't walk," recalled his partner, Rose Butt. "Getting up the stairs to a shower was even hard on him. Waking up from the bed just to come out for his breakfast was really bad."

From bad to much worse

By the fall of 2016, Hanley's condition had worsened and he was put on oxygen at home, but doctors still didn't know exactly what was wrong.

Hanley was sent to St. John's in January 2017 for a biopsy, but it didn't go well and his lungs collapsed. He ended up in an intensive-care unit at the Health Sciences Centre, where machines did his breathing for him.

It was only then that Hanley finally got a diagnosis of idiopathic pulmonary fibrosis, a condition in which scar tissue forms inside the lungs, making them thick and stiff and unable to move oxygen through the body.

The plan was to give Hanley a double-lung transplant, which would happen at Toronto General Hospital if suitable organs could be found in time.

However, Hanley's condition was so frail that doctors didn't think he'd survive the flight to Toronto, so he had to agree to go on life support.

"That was my only alternative, to get up there on life support and hope and pray that a set of lungs would become available, fairly quick," said Hanley.  

His partner remembers realizing how urgent things were: "They gave him 15 minutes to sign his papers to be on life support, and he did. And we waited for the call," Butt said. 

Elation and disappointment

Fortunately for Hanley, the good news came quickly that a set of lungs was available, and he had his surgery, which was deemed to be a success.

However, there was bad news, too, as the months of sickness had taken a toll on his body.

Shortly after surgery last year, Hanley's kidneys failed, leaving him facing another life-changing reality: he would need another transplant.

"It was discouraging," said Hanley. "I remember quite well. It was very, very difficult to have that news."

Hanley had to go back to being hooked up to a machine, not 24-7, but three times a week for dialysis.

Now he's back waiting to see if he'll be eligible for a transplant — this time for a kidney.

Waiting game

Right now, Hanley is getting tested to ensure he's healthy enough to qualify for another transplant.

While he waits, he's grateful to at least be able to enjoy some degree of good health, while breathing better than he has in years.

Even carrying on a conversation is easier for Hanley than when his health was in decline.

"I can speak and not have to take gasps of breath, so that in itself is amazing. I couldn't get any more than a couple of words out and I was out of breath."

Better days ahead

Hanley is hopeful that a kidney transplant will come through for him.

He knows it's a lot to ask, after just receiving two healthy organs to replace his failing lungs.

But he knows better than most how much organ donation means to recipients and their families, so Hanley has become an advocate.

"It's so important to sign that donor card. When you're passed away, you're not going to do anything with your organs, but somebody else could."

Hanley's dreams for the future aren't elaborate: fishing and golfing, spending time with his son and grandson, and getting back in the workforce.

They are simple dreams that could once again come true with organ donation.