Jerry Craig was prescribed antibiotics for the 13th time in a year when he put his foot down.

He was a busy volunteer and loved helping his Dartmouth, N.S., neighbours with projects around their homes. But something was off. It was becoming increasingly difficult to walk up stairs; he had begun gasping for breath even on small inclines.

"I was slowly deteriorating and I didn't know why," he remembers.

Craig was told he had everything from a post-nasal drip to pneumonia. Eventually he insisted on seeing a respirologist, who diagnosed him in 2014 with idiopathic pulmonary fibrosis (IPF), a lung disease he'd never heard of before. He now believes he'd been living with the condition for five years before that point.

"You can hope that the medical system runs its course and you get properly diagnosed and properly treated, but you can't sit back. Otherwise you're going to be left behind, no question," the 73-year-old said.

IPF is a chronic disease that results in scarring on people's lungs. Symptoms include breathlessness and coughing. Across Canada, more than 14,000 people live with it.

"The lungs stiffen, starting from the outside of the lungs and they slowly shrink," said Dr. Martin Kolb, who leads a specialty clinic for interstitial lung disease in Hamilton.

Often takes 5 years for diagnosis

A recent report, the Burden of Idiopathic Pulmonary Fibrosis in Canada, said people with IPF are frequently told they have bronchitis, asthma, emphysema and other lung-related issues.

The pharmaceutical company Hoffmann-La Roche Ltd. commissioned the report and worked with Canadian Pulmonary Fibrosis Foundation — a charity that supports patients and their families — and several physicians across Canada, including Kolb.

Some research indicates people have symptoms five years before a diagnosis .

Another challenge is access to care, treatment and specialists, and the report found that varies across Canada. For instance, nationally there are 2.2 respirologists per 100,000 people. In Nova Scotia, there are fewer: 0.9 per 100,000.

Kolb said people with IPF are usually over the age of 65 and often attribute the symptoms like breathlessness to a sign of aging before they realize the problem goes beyond that.

The deterioration happens rapidly too. On average, people only live three to five years after they are diagnosed.

"It's not a cancerous disease, but it kills people at a faster pace," said Kolb. "When you compare this to other types of cancer, colon cancer, breast cancer, prostate cancer, they all have a better prognosis than IPF, which is really quite shocking to people when I tell them this type of information."

He said counselling, information, rehabilitation and education all can improve people's quality of life.

Jerry Craig with his family. He has been screening for a double lung transplant and is hopeful he'll get the call in the next few months. (Zonda MacIssac/Facebook)

Craig is committed to sharing his experiences with others in hopes of easing the burden for them and their loved ones.

A few years ago, he helped found a chapter of the Canadian Pulmonary Fibrosis Foundation. The local group has grown to nearly 30 people, including those with IPF and their caregivers.

"It just makes you feel you're not alone, for a start. The group is very good for that," he said.

They meet once a month at the Canada Games Centre in Clayton Park, discussing everything from medication side-effects to the many steps involved in lung transplant testing. The next meeting is Dec. 18.

"With IPF, there's an end point to it. You can't breathe anymore. Once you can't breathe, you get a transplant or you die. There's no other options about it. We talk to people about all the things you can do — logistically, financially, support wise — through the group," Craig said.

Hoping for a transplant

He now relies on an oxygen tank around the clock. Though he can no longer walk his beloved dogs, Harry and Hughie, he manages to get around a bit with the help of scooters and a battery-powered oxygen tank.

Craig and his wife, Vickie, recently spent several weeks in Toronto doing pre-screening for a double lung transplant. They're hoping to return there this winter if he's selected for a transplant.

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