Bob Nesbitt, who had a double-lung transplant operation 20 years ago, holds up his organ donor card.

Imagine that every breath is a vital gasp as you try to draw air into your fluid-filled lungs during an uncontrollable bout of hacking that offers little relief.

That's how Bob Nesbitt felt 20 years ago as the cystic fibrosis he didn't know he had wreaked havoc on his respiratory system.

Luckily, at the same time, Toronto General Hospital surgeons were pioneering a new, but highly risky, lung transplant surgery that could prolong the life of people with lung disease.

"I thought I was drawing my last breath a few times," says Nesbitt, who in his early 30s had withered to 98 pounds. "I had resolved pretty much that this was it."

Fortunately, it wasn't — but Nesbitt would discover at the late age of 35 that he had CF, the most common fatal genetic disease affecting Canadian children and young adults.

Lung disease is almost always what kills people with CF. Winded by climbing a single flight of stairs, Nesbitt learned he had 12 to 18 months to live unless he received a lung transplant.

Surgery

On Dec. 31, 1990, just hours after a gruelling double-lung transplant operation and while hooked up to a ventilator, he scrawled a note to his wife, Kathi: "How about summer at the cottage?" and "Can't wait to go dancing."

Today, at 56, Nesbitt is one of the world's longest-living double-lung transplant survivors. Thanks to the lungs of a woman he never knew, he draws big, full breaths every day — a vast improvement from the laboured breathing, irrepressible coughing and limited mobility he endured in his pre-transplant days. This New Year's Eve, he and his wife will mark the 20-year anniversary of his Second Act. While the couple is at odds about the size of the party (she wants a big splash, he'd prefer a quiet affair), they're sure to celebrate.

If one was accepted on the transplant list in 1989, the odds of receiving new lungs then were 30 per cent, the same number Nesbitt was given for surviving the transplant beyond a year.

Today, thanks to improving medical technology and public awareness, 80 per cent of those on the list can expect to receive an organ — and 85 per cent of those who do will live more than a year after the transplant.

CCFF anniversary

Nesbitt especially wants to drive that message home in the CF community, which is celebrating a milestone of its own this year with the 50th anniversary of the Canadian Cystic Fibrosis Foundation. He draws a parallel between his 20 post-transplant years and the foundation's anniversary.

"We were the people in covered wagons going west, we were the pioneers," Nesbitt says. "Personally, I want to serve as an example to show that transplants can be successful."

When the foundation was created in 1960, most children with CF did not live long enough to attend kindergarten. Today half of all Canadians with cystic fibrosis are expected to live into their 40s and beyond.

Still, the lives of people with CF are cut short too often. In Canada each week, two children on average are diagnosed with cystic fibrosis and someone dies from the disease.

The CCFF is a Canada-wide health charity with 50 volunteer chapters that funds CF research and care. In 2010, the foundation is supporting more than 50 research projects that are exploring all aspects of the CF puzzle.

CF is a complex disease that mainly attacks the digestive system and the lungs, causing a buildup of thick mucus, which leads to severe respiratory impairment. People with CF also have great difficulty digesting food and absorbing nutrients and vitamins.

Despite his new lungs, which are CF-free, Nesbitt still has cystic fibrosis in the rest of his body and suffers gastro-intestinal, sinus and pancreatic difficulties. In addition to the post-transplant anti-rejection drugs he must take, he also needs to swallow enzymes to help digest his food and he's now insulin-dependent.

'It's a fantastic story because someone like him would be dead in six months [without new lungs]. Every lung transplant we perform is like a miracle, and that doesn't wear off.'—Dr. Shaf Keshavjee, University Health Network

He's not complaining, though.

"I consider myself stale-dated already," jokes the assistant public works director with the Town of Grimsby, Ont., who calls people with the disease CF-ers, unlike today's CF youth who refer to themselves as FiBROs and Cysters. "My expiry date has already passed, so concerns about diabetes and taking medications, I don't have."

Toronto General Hospital is studying 20-year-plus double-lung transplant survivors like Nesbitt, because the odds were stacked against them. The 10-year survival rate for all double-lung transplant recipients is 35 per cent. For some reason, possibly their youth when most require new lungs, CFers generally have a higher long-term survival rate than other lung transplant patients.

"He is unique that he's survived so long," says Dr. Shaf Keshavjee, surgeon-in-chief of University Health Network and director of TGH's lung transplant program.

"It's a fantastic story because someone like him would be dead in six months [without new lungs]. Every lung transplant we perform is like a miracle, and that doesn't wear off."

Nesbitt believes he was spared for a purpose, and that way of thinking is there in much of what he does. Today, besides continuing to work, though he could have retired last year, Nesbitt mentors transplant patients and gives talks to other CFers and service groups.

Though he has scaled back his involvement in recent years, since 1990 he's been in "post-transplant overdrive," a payback of sorts for his second chance, volunteering with the Lung Association, the Kidney Foundation, the Canadian Cystic Fibrosis Foundation and as president of the Canadian Transplant Association.

Of his payback efforts, Nesbitt is most proud of his work raising awareness and funding for organ and tissue donation in Ontario. As a member of the Premier's Advisory Board on Organ and Tissue Donation, Nesbitt was on the ground floor of what would become the Trillium Gift of Life Network. So what does this "vintage" lung transplant recipient, as he calls himself, plan to do at his 20th-year bash? He says he will remember those living and gone who have touched his life. He'll be in the moment.

And hopefully, he will dance.