Proposed Edmonton recovery centre aims to give lung transplant patients financial breathing room

When doctors told Karen Ganong she needed a double lung transplant she thought they had the wrong person.

What started as a cough in April last year, resulted in several hospital visits and respiratory failure.

Ganong has since been diagnosed with interstitial lung disease.

From Airdrie, she and her husband Fred have been in Edmonton for three weeks undergoing lung boot camp to strengthen Ganong's condition before her transplant.

Alongside the stress about her health, they say finding a way to afford secondary accommodation has taken a toll.

"Sometimes you wonder, are we going to be able to continue to afford this? Do I give up and just die?" she said.

"Just the stress and the anxiety is just beyond what anybody should have to sustain."

Alberta Lung hopes to provide support financially and emotionally with a proposed living facility for patients and families awaiting a transplant.

Breathing Space is designed to not only put a roof over people's heads, but create gathering spaces for community and family support.

"They need that support, whether it's mental health or just a community, a coffee chat with another family going through the same thing," Leigh Allard, president and CEO of Alberta Lung told CBC's Radio Active on Monday.

Alberta Lung has already secured the land for the project and hopes to break ground next year.

Allard said while they have done some fundraising, additional financial support from government and the community is required to complete the $50 million project.

Fred and Karen Ganong, have been in Edmonton for three weeks for lung bootcamp, in preparation for Karen's transplant. (Submitted by Fred Ganong)

The University of Alberta Hospital in Edmonton is one of only four places in Canada to get a lung transplant.

The city serves the largest geographical area in North America for lung transplants including Manitoba, Saskatchewan, Northwest Territories, and Northern British Columbia, according to Alberta Lung.

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Experiences like Ganongs are unfortunately not uncommon, Allard said — especially for those coming out of town, as patients are responsible for finding their own accommodation.

"They're just living like normal Canadians, Albertans. And then they have this added burden that's out-of-pocket expenses for housing, for food, parking, extra medications, et cetera."

"It's quite burdensome for folks not just financially but emotionally and mentally."

Because patients go through a four-week boot camp, don't have an exact timeline for their transplant date, and need a minimum of three months to recover in Edmonton, the cost can run anywhere from a few thousand dollars to up to $100,000, she said.

An artist rendering of a gathering space in proposed Breathing Space facility. (Submitted by Alberta Lung)

As for Ganong, when asked what a space like this would mean for patients like her, she said it would be life-changing.

"Without the added burden of the financial accommodations, it would just be amazing," she said. "It would be safe and close and resources would be there for any education that we needed."

She hopes that with new lungs, she will be able to get back to what she loves — cooking with her grandchildren.