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A year and a half after his lung transplant, Robert Davidson (centre) and fellow referees volunteer at a soccer tournament for cystic fibrosis. (Photo: Robert Davidson)
Robert Davidson has a lot of good things happening in his life these days.
"I've got a granddaughter now and I'm not dead," said Davidson, the wry-humoured 65-year-old lung transplant recipient diagnosed with Idiopathic Pulmonary Fibrosis (IPF) six years ago. Today, he can breathe, stand-up and brush his teeth at the same time.
IPF is a rare disease – a scarring in the lungs which makes it difficult to breathe. Over time, the scarring becomes so thick that the lungs cannot take in oxygen. "Idiopathic" means of 'unknown cause'.
Don't believe everything you read
In 2007, Davidson coughed up blood while volunteering as a soccer referee. Shortly after, he was diagnosed with IPF. At the time, he knew nothing about the condition.
His wife, Heather, who had known someone with IPF, was horrified by the diagnosis.
Davidson's doctor told him not to do research on the Internet because it would scare him. He ignored that caution.
Online, he found that IPF was fatal; he could expect to live 2-5 years. There was no treatment or cure. However, he also learned that some people had lived for 18 years.
"In 2008, I was fine. IPF is the kind of disease that just moves along," said Davidson who began ticking off items on his bucket list. He travelled to Scotland, China and the Himalayas. The disease continued to creep up on him. To make matters worse, he had a minor heart attack in 2009.
Davidson was referred to Toronto General Hospital's Lung Transplant program to be monitored more closely in case the disease progressed. He was told to lose weight. By drinking only protein drinks, he lost 70 pounds. As time marched on, his health declined and he was close to dying.
By the end of 2009, Robert was on oxygen. At home, much of his time was spent sitting in a chair "doing nothing". In fact, chairs figured very prominently in his life. He lined them up all over his house just to move 30 feet. That Christmas, Robert used a wheelchair to do his shopping at the mall.
"It was really rough. It took courage just to move around. Even with oxygen, I couldn't breathe," he remembered. "When you have IPF, you can't do two things at once," he said. He had to sit down to shave. Everything takes great effort when you can't breathe.
Robert Davidson and his wife, Heather, established the Canadian Pulmonary Fibrosis Foundation in 2009. (Photo: Robert Davidson)
'Breathing was beautiful'
By November 2009, Davidson needed help to shower and dress.
Hope arrived in 2010, when he was placed on the lung transplant waiting list.
His physiotherapist set up his exercise program to help get him in shape for a transplant; the next day, his oxygen saturation plummeted.
In January 2010, Davidson received that wonderful call: "We have lungs. How long will it take you to get to Toronto General Hospital?" His adrenalin kicked in, but the Markham, Ontario resident remained calm.
As he was wheeled into the OR, Davidson wondered if he'd survive. "If it didn't work out, it wouldn't be a problem for
me, but I knew that Heather would be very upset if I died on the table," he said.
The operation worked out.
"Breathing was beautiful," he remembered.
"All of the doctors, nurses and personal care assistants at the hospital were terrific. They were competent, attentive, caring and friendly. The best in the world," added Davidson with gratitude.
A positive attitude
"I am a positive sort of person. I knew I was going to beat the disease somehow," he said. His wife supported him all the way and tried to keep life as normal as possible. It was a huge strain on her.
It's been almost four years since Robert's transplant. The experience hasn't always been smooth sailing. Davidson has had four organ rejection episodes and four major infections.
Robert and Heather are givers. When they found there were no resources for people with IPF in Canada, they thought, "What can we do about it?"
In 2009, single-handedly, the couple established the
Canadian Pulmonary Fibrosis Foundation.
The organization provides education and support to people affected by pulmonary fibrosis by answering non-medical questions about the disease. In addition, they have supported a number of UHN programs through their Foundation's fundraising efforts.
Davidson has also written a book
"Because Breathing Should Never Be Hard Work".