Transplant patient will advocate for others

Although Canada has a National Health Care program patients must still provide for their travel and accommodation costs plus other living expenses when moving to a distant transplant center for their procedure.

CBC News
The Prince Edward Island (P.E.I.) government needs to do more to help people like her who have to travel off-Island for medical procedures, says a double-lung transplant patient.

Melissa MacPhail recently received a double-lung transplant in Toronto. She's been living there since January 2010 at a cost of $3,000 a month. Her rent alone has been $1,500. When she arrived with her son and mother she was receiving no support from the government at all, but the province began providing $1,000 a month last spring.

That's still significantly less than the $1,500 other Maritime governments provide.

"To match New Brunswick and Nova Scotia would be nice," MacPhail told CBC News Wednesday.

"An extra $500 that could go towards food right? When you're sick, families are stressed."

The provincial government could not be reached for comment Wednesday.

MacPhail received her transplant in November, but her expenses in Ontario continue. She is still being monitored by doctors at Toronto General for signs her body is rejecting the lungs.

The 32-year-old suffers from scleroderma, a disease which causes hardening of the lungs and makes it impossible to breathe. She is still on medication for that, plus anti-rejection medication. In total 65 pills a day.

"It's very nerve-racking, I'm trying not to focus on it. You always have it in the back of your mind. It can never go away because it's your life," she said.

Still, MacPhail is thrilled with the difference her new lungs are making in her life.

"I'm still kind of like, pinch me! To take a big deep breath now feels like the big wow factor," she said.

Three months ago MacPhail could barely walk down the hall without straining to breathe, now she can go skating with her son Keegan.

"That was really amazing because when I was skating my lungs weren't the issue, but my ankles [were], just from being out of shape," she said.

MacPhail got to see her old lungs, and she said they looked bad: full of fibrosis and white lumps where it should have been delicate pink tissue. The doctor told her he was surprised she lasted this long with them.

Campaigning for organ donors
MacPhail has met a lot of other people waiting for transplants while in Toronto, which she said has been wonderful, but also frustrating as she watched people die because transplants were not available.

"It's so life-changing, in bad ways and good ways," she said.

"I've met so many wonderful people along the way, but I've lost wonderful friends along the way too."

When she returns to P.E.I. MacPhail plans to start a campaign for organ donation in the Maritimes. She wants to travel around telling her story; living proof that signing donor cards can save a life.

MacPhail hopes to move back to P.E.I. in June.

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