Double lung transplant on hold for woman because she can't find volunteer caregiver

·4 min read
Wanda McCarthy of Grand Falls says she's eligible to undergo a double lung transplant but hasn't been able to find someone willing to act as her support provider. (Submitted by Wanda McCarthy - image credit)
Wanda McCarthy of Grand Falls says she's eligible to undergo a double lung transplant but hasn't been able to find someone willing to act as her support provider. (Submitted by Wanda McCarthy - image credit)

Wanda McCarthy needs new two lungs, and is eligible to undergo the transplant procedure in Toronto.

The only thing standing in her way? Finding someone to volunteer to be her live-in support provider for up to a year in Toronto while she first waits to receive the new lungs, then recovers from the operation.

At 47, McCarthy said she's spent her whole life in the northwestern New Brunswick town of Grand Falls and has close family and friends there.

After being recommended for a double lung transplant by a doctor with the Toronto lung transplant program in October 2019, she set out asking everyone she knew if they'd be willing to serve as her caregiver, which she must have before being put on the waiting list of the University Health Network's lung transplant program.

No one's taken her up on her plea.

"Everyone that I mentioned it to [said] 'Well, I hope things work out.'

"I spend nights crying myself to sleep at night because it hurts knowing so many people and not one can help you."

McCarthy said she has pulmonary fibrosis, which led her to get the assessment in 2019, which found that a double lung transplant was the right option for her.

Almost two years later, McCarthy said, her lungs only work at about 32 per cent capacity. Performing simple daily tasks have become a challenge.

"I walk from my bed to the table — kitchen table. I need my walker. I'm out of breath.

"I can't clean my own apartment. I have to have someone come in. Meals are delivered. It's just not me."

A rare situation to be in

Barbara Walls with the New Brunswick Lung Association said McCarthy's situation is rare and unfortunate.

In 2010, she set up a lung transplant support program, which has helped see about 100 patients through the process. McCarthy is just the second person in those 10 years who's been unable to receive a lung transplant because of an inability to find a willing support provider, Walls said.

Submitted by Barbara Walls
Submitted by Barbara Walls

"I created this program to help people, so when when there is someone who can't get help and really is basically run out of options, then it is emotionally disturbing and sad to try and imagine someone in that position," Walls said.

"I get calls for other things, too, that New Brunswickers need help with, and and when you can't help them it's not a good feeling."

Walls said a support worker would have to leave their job temporarily to fill the role, but there are ways under the employment insurance system to get financial support for that specific purpose.

Another option would be for McCarthy to hire someone to act as her support worker, Walls said.

However, Walls said, she crunched the numbers back in 2010 on how much that would cost and found it would come up to about $250,000 over a year. That's not including the cost of rent, though she said the government of New Brunswick does offer a monthly $2,500 rent allowance for persons going through the procedure.

McCarthy said while she could probably afford rent with the government's help, spending that much money to hire a support provider isn't an option for her.

Watch: Why high costs almost kept this Nova Scotian from a lung transplant

Dr. Shaf Keshavjee, director of the Toronto Lung Transplant Program, confirmed that having a support provider is required prior to being admitted and put on the waiting list to receive a lung transplant.

People who need a lung transplant are generally "quite sick" even before the procedure, and a live-in support provider helps ensure the recipient is kept healthy enough to go through with it, Keshavjee said.

Then once the procedure is done, the patient typically needs a lot of help taking care of themselves and going to followup appointments in the months after, as staff monitor for any complications following the operation.

Submitted by Dr. Shaf Keshavjee
Submitted by Dr. Shaf Keshavjee

Keshavjee said instances of people having no friends or family able to serve as a support provider is rare, but if it does happen, staff do what they can to connect the patient with people who could help in that capacity.

"I think this is the kind of thing where we say, look, if that's the only thing in the way, like how can we make it happen? And usually we get people," Keshavjee said.

"I mean, there are even people who volunteer who say, you know, 'I know about lung transplants because my husband had it, and I'm happy to help and I'll be there for so and so.'

"And, you know, there's wonderful people around that can do that, and we do our best to kind of match or figure that out. Get them to a transplant, save a life."

McCarthy said she wasn't aware help finding a support provider was offered by the Toronto lung transplant program, but said she plans to look into it.

"I could, or if somebody wants to try it for me, I'd be willing to because I'm getting very tired and weak," she said.

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