ELLERSHOUSE, N.S. — Kimberly Gillingham’s voice cracks and squeaks while she talks.
She yearns for the day this is no longer the case.
And doctors say that day could come.
But there’s a catch.
She has to make it to Toronto first.
Gillingham grew up in Springfield, on a 200-acre farm in the middle of western Nova Scotia.
She moved to Hants County after her family packed up for Halifax because she had trouble living in a major city.
“I’m a country girl,” says Gillingham, between laboured coughs.
Her friendly cats hop onto the couch and armchair, purring softly.
She says she loves living in Ellershouse - the peace, the quiet, the friendly people.
A non-smoking sticker is on the door, reminding people that oxygen is in use.
“I’m healthy, except for my lungs,” she said.
“I was stupid when I was young. I smoked, started around 12 and I quit when I was 34,” she said. “When I was in my late-20s I used to go scuba diving and we bought this huge fibreglass boat and I sanded that off for about a month and I didn’t wear a mask.”
She was also using lead paints and other chemicals that wreaked havoc on her lungs. Eventually, they had enough.
The tragic irony is that after toiling away on the boat she poured untold amounts of time and energy into, she wasn’t able to go in the water anymore.
She quit smoking, but by then it was too late.
20 YEARS WITH COPD
She’s been suffering from chronic obstructive pulmonary disease, or COPD, which causes shortness of breath and a severe cough, for 20 years.
The disease nearly claimed her life in 2018 when she contracted pneumonia. The same year, she dealt with a serious and sudden flood in the community that caused major damage to her basement and she did not have an insurance policy that would cover the necessary repairs.
“At a certain point I was just like ‘give me a break,’” she said.
She carries an oxygen tank everywhere with her, takes a heavy dose of medications daily and has to remain indoors for the most part. Any infection or cold could be life-threatening.
She travels to the Valley Regional Hospital in Kentville twice a week for physio, which keeps her muscles active. It’s difficult to just get around, let alone exercise, in her current state.
There’s some light at the end of the tunnel though, with a potential lung transplant. But that has its own hurdles.
The transplant surgery has to be done out of Toronto, as it’s currently not offered in Nova Scotia.
She’s heading up in May to find somewhere to live for several months, which will be a major expense, while she waits for a donor.
TORONTO’S NOT CHEAP
She’ll have to live close to the hospital as well, as organ donations involve extremely sensitive timing.
And post-op, she’ll have to stay there for four to six months for recovery.
So not only will she be living in Toronto waiting for the surgery, she’ll have to remain there for an extended period of time, too, with someone by her side.
She’s expecting to pay upwards of $3,000 a month for a furnished place near the hospital in Toronto.
In desperation, she set up a GoFundMe page to help with the expenses, but it hasn’t gained much traction yet, just over $1,000 so far.
“I started freaking out, panicking. I spoke with Dr. Chiasson, one of the transplant doctors in Halifax and she told me I have to have $10,000 to start,” she said.
“I need $10,000 to live - and that’s scary.”
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Despite it all, Gillingham has hope.
“For the first time in a long time, I have hope,” she said.
She’s hoping that after the surgery, she can regain some of her independence.
“After I’m healthy, I have some ideas on how I’d like to give back to the community,” she said.
And she’d like to get back to doing what she loves.
“I just want to go swimming,” she added. “It’s been so long.”
NO LUNG TRANSPLANTS IN N.S.
Department of Health and Wellness spokesperson Andrew Preeper said the government is aware of the financial and emotional toll waiting for an organ transplant can have.
Nova Scotia’s Out of Province Travel and Assistance (OPTA) Program offers eligible patients requiring lung transplants travel assistance of up to $1,000 CAD for a return trip.
They are also eligible for up to $1,500 CAD a month, for out-of-province accommodations.
“We understand the necessity and importance for Nova Scotians to have someone accompany them when travelling out of province,” Preeper said. “That’s why the program includes financial assistance for an escort to travel.”
The province is currently reviewing the OPTA program based on feedback about the challenges of extended out-of-province medical travel, Preeper said.
He added that they’ll be sharing the results of the review when it’s complete.
Lung transplants are currently the only organ transplants that aren’t performed in Nova Scotia, Preeper said.
Four provinces in Canada have lung transplant centres – British Columbia, Alberta, Ontario and Quebec. Nova Scotia patients are referred to the centre in Toronto.
Preeper said how proposed legislation regarding organ donation, which assumes every person is an organ donor by default unless they opt out, could impact patients like Kim Gillingham remains to be seen.
“It’s important to note that the legislation is still before the House of Assembly and not yet law. Once passed by the legislature, it will be 12-18 months before the new law comes into effect to allow for planning, education, and public awareness,” he explained.
“This new legislation will not change the need for people to be referred to Toronto for lung transplant surgery. That said, we certainly hope that it results in more donors and shorter wait times for those who need this life-changing gift.”
