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Advocates push for equitable access to oxygen for Pulmonary Fibrosis Awareness Month – HalifaxOUS News

A Nova Scotia senior has made it her mission to draw attention to critical gaps in the health care system by following a life-saving procedure two years ago.

John Dennis was originally told that he would not be eligible for a lung transplant because of his age.

“I just kept fighting and fighting and fighting,” said Denise, now 76, from her home in Halifax. “You have to advocate yourself.”

The procedure was necessary because of his illness: idiopathic pulmonary fibrosis (IPF), a progressive disease in which scar tissue builds up in the lungs. It wasn’t until his brother, who passed away from pulmonary fibrosis in 2016, that Dennis was officially diagnosed.

“I immediately went to my family doctor and said I needed to see a respiratory specialist, I have pulmonary fibrosis,” Dennis said.

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Sure enough, after some tests, Denise was diagnosed with IPF, although doctors said she likely had the disease since 2009.

“So I was very lucky that it was going slow, because generally — at the time — they were telling people two to five years,” he said.

Denise received a lung transplant in Toronto in 2020.

Pulmonary fibrosis makes breathing difficult and painful. It can be difficult to diagnose, as the symptoms are relatively vague: shortness of breath, cough and widening and rounding of the fingers and toes, also known as clubbing.

John Dennis was diagnosed with Idiopathic Pulmonary Fibrosis in 2016.

Canadian Pulmonary Fibrosis Foundation

There are some anti-fibrotic drugs that interfere with the body’s ability to generate new scar tissue, which may help slow the progression of the disease, but there is no cure, and most IPF patients eventually end up on a transplant list. Will be

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“Breathing is no longer a problem,” Dennis said. “I mean, my ribs, my chest, were pretty bad before the transplant.”

Call for universal access to oxygen

While oxygen will not cure the disease, it will help ease the discomfort. However, access to oxygen is not uniform across Canada.

“This has been a big problem especially in the eastern part of the country, where the norms of oxygen access are much more restrictive than in provinces like Ontario,” said Dr. Shane Shapera, director of the Interstitial Lung Disease and Pulmonary Fibrosis Clinic. Toronto General Hospital. He treats most of the IPF patients in Atlantic Canada.

He said the criteria some provinces use to decide who gets oxygen, such as Nova Scotia, were not developed for this relatively uncommon disease.

“They were developed for diseases like emphysema or COPD, and the way people with those conditions have low oxygen levels is different than in IPF,” Shapera said.

“As a medical specialist it’s really hard to see my patients who clearly need something and can’t get it.”

Global News reached out to the Department of Health for an interview, but they declined.

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Dennis said he was also having trouble accessing oxygen because his levels weren’t staying low enough for a long time – “a terrible situation,” he said.

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“We don’t think it’s right. It should be a universal right for anyone who needs access to oxygen,” said Sharon Lee, executive director of the Canadian Pulmonary Fibrosis Foundation (CPFF).

Equal access to oxygen is something the CPFF is currently working on. It is undergoing a survey among respirologists, patients and oxygen providers to see how existing systems are working.

“And we’re going to take that survey and we’re going to make a white paper to say, ‘Here’s where we think the national standard should be. It doesn’t matter where you live in Canada’ ‘You’ll have the same standards of care,'” Lee said.

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new lease on life

Denise’s new lungs have helped her do more than just breathe easier. He has raised more than $25,000 for research, has led Nova Scotia to cover drugs that slow the progression of the disease and he legislates an agreed-upon model for organ donation. Be a part of the national campaign.

“And when I was on PEI this summer, the health minister said to me, ‘John, your efforts are paying off. We formed a committee between New Brunswick, PEI, and Newfoundland, and we hope to match Nova Scotia’ And implied consent is the law until the end of the fall,'” Dennis said.

“And I’m just excited about it.”

Dennis has raised over $25,000 for research into pulmonary fibrosis.

Dennis has raised over $25,000 for research into pulmonary fibrosis.

Canadian Pulmonary Fibrosis Foundation

September is Pulmonary Fibrosis Awareness Month.

“We are not getting the exposure that we need. That is my biggest concern,” he said.

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“It’s a terrible incurable disease and there isn’t enough known about it. You ask the average person, do you know what pulmonary fibrosis is? And they don’t have a clue.”

© 2022 Global News, a division of Corus Entertainment Inc.



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