Monday, November 24, 2008

Canadian man asks government to help with wife's lung transplant expenses

Cape Bretoner whose wife needs lung transplant says province should help out

The Canadian Press

HALIFAX, Nova Scotia — Unless he gets some financial help, Ken MacKay says his savings will soon dry up, forcing his wife Marilyn - awaiting a double-lung transplant in Toronto - to return home to Cape Breton to die.

MacKay made a tearful plea for help at the provincial legislature Friday, saying the province should cover the living expenses for anyone forced to leave the province for medical care for more than three months.

The opposition Liberals introduced a bill Friday that would make the proposal law, though they couldn't say how much it would cost the province.

When asked how his wife is doing after spending the past 16 months in Ontario, MacKay could barely contain his raw emotions.

"Depressed. Really, really..." he said, his words trailing off, tears welling up in his red eyes. "For (the government) to just turn their backs on a life-and-death situation . . . I think it's just terrible."

Nova Scotia, like several other provinces, does not have the staff and facilities to handle lung transplants. Patients are forced to travel to Toronto, where they must stay within a two-hour drive of the hospital as they wait for a suitable donor.

The Nova Scotia government covers all medical costs, including support services such as medically necessary oxygen for home care. But the MacKays have to pay for their food, lodging and other expenses.

If MacKay's wife returns to Cape Breton, her prospects look bleak.

"She'll be taken off the transplant list and she'll just come home to spend what time she has left with her family," MacKay told a news conference.

MacKay said he's sold his car, his boat, his all-terrain vehicle and he expects to be broke by the end of January as the expenses keep piling up.

"The government should have some kind of funding in place because the costs are astronomical," he said afterwards.

"You go to bed and the last thing on your mind is finances. You get up in the morning and the (first) thing on your mind is finances. It's very stressful on Marilyn ... It's hard."

His 57-year-old wife is staying with a nephew, which has helped cut costs. Still, MacKay said the total bill so far is more than $35,000.

Friends and relatives in his hometown of Louisdale have held fundraisers and the Lung Association of Nova Scotia has also pitched in.

"It's been a hard struggle, but the communities have rallied together and supported us," said MacKay, an engineer who works at a lobster holding facility in Cape Breton.

"My hometown of Louisdale has been fantastic ... I've had support from right across Canada, actually."

But the money is quickly running out.

Health Minister Chris d'Entremont said the province wants to ensure Marilyn MacKay gets the transplant, and he pledged to present some options before the end of January.

"We been trying to help out as best we can, trying to stay within the guidelines," he said outside the legislature. "We don't want Marilyn to come home. We want Marilyn to get her transplant."

However, the minister would not commit to offering support to other families facing similar challenges, and he pointed out that only a few other jurisdictions cover this type of cost, Newfoundland being one of them.

Still, he made it clear he wanted to find some kind of solution. He mused about having the province buy a house in Toronto to provide patients with a place to stay, and he committed to looking at Newfoundland's program and reviewing proposals from the lung association.

"I don't want to see anyone face more hardship, he said. "It's bad enough that they have to wait for a double-lung transplant."

MacKay says his wife developed a dry cough that just wouldn't go away about four years ago. After a battery of tests, she was diagnosed with interstitial lung disease, a progressive scarring of the lung tissue that is generally irreversible.

Doctors believe her condition stems from a bout of double pneumonia she had when she was a little girl.

Marilyn MacKay's left lung is so badly scarred it has stopped functioning, while her right lung is down to 28 per cent of its typical capacity.

She has been working hard to get ready for the transplant, having lost 100 pounds while continuously undergoing physiotherapy to make sure she is well enough to endure surgery.

But the constant worry over finances is taking its toll, her husband says.

"The stress is not good for her," he said.

Aside from lung transplants, patients from Nova Scotia seeking certain types of cancer therapy and other particularly complex surgical procedures must leave the province to be treated.

NDP health critic Dave Wilson said his party supports the Liberal bill in principle.

"The government needs to look at this," he said, recalling the case of a single woman from Nova Scotia who died a several years ago in Toronto while waiting for a lung transplant.

"The government was of no assistance," said Wilson. "She felt, right up until the end, that she was alone in this. And that's just not right."

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1 comment:

Crystal said...

I also am waiting for a double lung transplant,,living in Nova SCotia. I received my call from Toronto General Hospital just before Christmas of 2009 telling me to come to Toronto,,the only thing keeping me from moving ther to save my life is ther $40,000.00 I have been told it will cost me to live there to await my transplant.
My income is a tad bit over $1000.00 per mth with my LOng Term Disability and CPP,,my caregiver must take a leave of abscence from his job to come with me and is not elgible for Unemployment Insurance because he will not be available to work.
My rent will be $1280.00 per month,plus living expenses and I still have $600.00 worth of bills home here in Nova SCotia I must cover when I move.
The government does assist me in my rent after 3 months,but I still must pay the rent and get reimbursed,,I don`t have the money to pay the rent in the 1st place. To move I must pay 1st and last mths rent plus damage deposit and moving expenses,thus far I have raised $12,000.00 which will be gone just for moving.
It upsets and makes me mad daily. Our government can aid Haiti and other nonCandian causes,,buy genoraters and spend our taxes elsewhere but when it comes to a Canadian born here and lived here my whole life,I ust die because the government will not hep me to live.
Why should my life have a price,,it is not my fault NS does not have the facilities here for my transplant. I have enough to worry about with my health to have to worry about raising $40,000.00 so I can live.
I wake every morning with a headache,,I know it is stress,I feel myself getting worse daily,,I was tild 1 yr ago come March I have 2 yrs without a transplant in 1 yr I have only been able to raise $12,000.00 my resources are running out as to who to ask for donations.
I no longer have any pride,,I beg for help now from anybody that will listen.
I want to live to watch my grandson grow,,I want to be able to pick him up and play with him,,but my health condition does not allow that.
The government has to step up to the plate and help,,I have been trying to raise the money,,I live in a small community my resources here are running out.
I want to live,I want to have my transplant but unfortunately not having enough money is what might kill me and not my disease.
The Nova Scotia government should be ashamed of themselves knowing a 47 year old woman could die because they feel my tax money should go elsewhere and not to a dying citizen.