New Brunswick

'I'm looking longer term now': Saint John's Elspeth Arbow gets 2nd set of new lungs

A young woman from Saint John is recovering from her second double-lung transplant, nine months after being placed on the transplant list and five years since she was told her lungs were in chronic rejection.

Arbow received her 1st double-lung transplant at age 13, says that donation gave her 8 years of education

Elspeth Arbow, shown here in January, 2016, is recovering from her second double-lung transplant. (Elspeth Arbow/Submitted)

Elspeth Arbow says her mental outlook depends very much on her physical health, and right now she feels unstoppable.

"I'm looking longer term now," said the 22-year-old Saint John woman, who is in Toronto recovering from her second double-lung transplant.

"This is so much better than it has been in so long that I'm happy."

Wouldn't have made it to high school

Arbow was diagnosed with cystic fibrosis soon after she was born. The incurable genetic disease destroyed her lungs, and she received her first transplant when she was 13 years old.

"I received eight years of education because of that donor," said Arbow, who is finishing up her studies at University of Toronto in the fall.

"I wouldn't have made it to high school without them," she said in an interview Wednesday with CBC's Information Morning Saint John.

But at age 17, just a month before starting cinema studies at U of T, she was told her lungs were in acute rejection and would need to be replaced.

"It basically means your immune system has figured out there is a foreign object in your body, and over time it wears it down," Arbow said.

Arbow, shown here with her friends in April 2017, said when her lungs went into acute rejection, she carried on for more than four years before asking to be relisted for transplant. (Elspeth Arbow/Submitted)
For no explanation other than close monitoring and "sheer stubbornness on my part," Arbow kept herself healthy enough to stay off the transplant list for more than four years, while she plugged away at her degree.

"I carried on as normal, probably much to the concern of my healthcare team … There was a slow decline over those years, but I kept saying, 'I can just accommodate through it,'" she said.

"So when I couldn't walk that far anymore I thought, 'That's fine, I'll take Ubers or taxis everywhere.' And when I couldn't keep up in as many classes as a full-time student, I was like, 'That's fine, I'll just take fewer classes.'"

In January, 2017, Arbow's health declined to a point that she wanted to be relisted, but she was still in store for a lengthy wait.

After a new round of health assessments and conferences by her specialists, she was placed on the Canadian lung transplant list on June 7, where she continued to wait for nine months until a match came in late March.

Arbow, shown here with her mother, celebrated her 22nd birthday on Apr. 11 while in hospital. She was three weeks post-transplant. (Elspeth Arbow/Submitted)
Arbow said as she lost more of her abilities toward the end of her wait, her state of mind plummeted.

"Understanding it was my second transplant, like no one has ever had a third transplant … I was always tired and sick of waiting and being in a worse state of limbo," she said.

"But I [also] thought, 'If I get at least five years, that'll take me to 27 and hopefully I'll get more and have a good, longer life. And in that time there's a lot of research possibilities that can happen.'"

'I can do anything'

Three weeks out of surgery, Arbow celebrated her 22nd birthday on April 11. She spent it in hospital, with her friends and family, and a renewed sense of optimism.

"I'm regaining these things I lost over the past five years that I'm like, 'I can do anything, this is amazing.'"

Arbow, shown here in July, 2017, said she wouldn't have made it to high school had it not been for that first donor. (Elspeth Arbow/Submitted)
Now out of the hospital, Arbow is putting her new lungs to work at physiotherapy sessions three days a week. Once she's cleared by her doctors and completes her degree, she plans to travel as long as her health permits.

The degree, the travel, and a prospective future in film festivals wouldn't be possible without the two donors, Arbow said.

1 donor, 8 lives

While 90 per cent of Canadians support organ donation, less than 20 per cent have made plans to donate, according to statistics from the Canadian Transplant Society.

Every year, thousands of Canadians are added to organ wait lists.

One donor can save up to eight lives and benefit more than 75 people. But hundreds of Canadians die each year waiting for an organ that never comes.

New Brunswickers can indicate their intent to be a donor through Medicare's request, replace and renewal forms, which are available on the Service New Brunswick website.

"It improves the quality of life exponentially. There are other people going on — they're able to see their grandkids, or have kids themselves because they had an organ donor," said Arbow.

"It really is a fantastic thing. It's giving the gift of life, which is so cliché but it's true. It's really important and something families should be talking about."

With files from Information Morning Saint John

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