3 decades of struggling to breathe could end with double lung transplant

A Charlottetown woman is in Toronto awaiting a big operation that will give her a chance at a normal life again.

Fifty-nine-year-old Sandra Livingstone has been living with a rare lung condition, extrinsic allergic alveolitis, for decades. The thought of that changing has her dreaming of simple things. 

"To be able to go for a nice long walk — I miss my walking desperately — and to be with the family without having to worry too much, to be able to do things with the grandchildren again," said Livingstone.

"It will be great."

Livingstone was diagnosed in 1987, but before her diagnosis came years of not knowing and experimenting with treatment as doctors tried to work out what was wrong with her lungs.

"It was really hard like, at the last of it, I just can't do this anymore. You know, you're more or less breathing with one lung," she said. 

"They just kept trying me on things, a puffer here and a puffer there, steroids, until finally they referred me to Halifax," she said.

It was the specialist in Nova Scotia who finally provided the diagnosis.

Hard for her family

Her condition was a challenge for her family too.

If Livingstone catches a virus it can make her condition worse. That means she can hardly leave the house, and people who are sick, including her grandchildren, can't visit.

"It was hard, when you see somebody struggle just trying to do everyday things, trying to breathe and be active," said her son, Troy Livingstone.

"She was always an active person and she always liked to do things around the house, and cook and all those things, and being outside and going for walks. When she got sick, that soon stopped." 

It was difficult to explain the situation to his children, he said.

"We always tried to keep the kids away as much as we could when they were sick, which was hard because they didn't really understand it," he said.

On her way to transplant 

Livingstone's health has been getting worse for the past three years.

She is extremely short of breath and fatigued all the time. Even getting dressed in the morning is difficult.

This fall, with a push from her doctor, she made the tough decision to get on the list for a double lung transplant.

"I just wasn't ready to give up, I guess," she said.

Her son believes any time she could have of relatively good health would be worth the risk.

"Even if you could just enjoy one year of not having to be on a breathing tube and being able to do something that you always liked to do, and just to get one year out of it, it would be fantastic for her," he said.

Waiting in Toronto

After a long process of tests, Livingstone has been assessed and approved for a double lung transplant, and will have to remain in Toronto until organs are found for her. That news came with a lot of emotion.   

"It was kind of overwhelming. They said 'Did you think you weren't going to make it?' I said 'Well, it was hard to say,'" she said. 

The procedure is not without risk. Livingstone will have to be careful with her new lungs. Her doctor compared it to trading one lung disease for another.

But for Livingstone more time outside, and with her grandchildren, is worth the risk.

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