Changes to living donor program good news for P.E.I. woman waiting for a kidney

A 30-year-old P.E.I. woman waiting for a transplant hopes changes to the living donor program will make it easier for Islanders to donate kidneys. 

The change is part of a five-year commitment to improve organ donation in Canada, involving Health Canada, all of the provinces and territories and Canadian Blood Services.

"We're looking at things like improving access to living donor kidney transplant," said Angela Carpenter, program manager for organ and tissue donation at the P.E.I. Department of Health and Wellness.

"We've already started transporting the organ instead of making the donor go to the recipient, which cuts down on travel and expenses, and just generally makes it easier for the living donor."

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Carpenter said the collaboration is also trying to make it easier for provinces to work together.

"Because a lot of times organs do get transplanted in another province, if there isn't a perfect match in our own program," Carpenter said.  

Paired kidney donation

In 2017, Sarah Newman received a transplant through the kidney paired donation program, where her father donated a kidney on her behalf to someone needing a transplant in Toronto, and she received a kidney from another donor who was a match for her.

But it wasn't easy. Her father, Boyd Newman, had to travel to Toronto to donate his kidney, while Sarah's surgery was happening at the same time in Halifax.

"It was so difficult, so, so difficult," said Penny Newman, Sarah's mom, who was with her husband in Ontario for his surgery.

"It was probably the hardest day of my life, waiting and hearing that my husband was going to be OK and that Sarah was going to be OK. It was a long day." 

The kidney that Sarah received in 2017 lasted only about a year and a half before it began to fail.

She is now on the waiting list for a second kidney transplant, doing dialysis at home while juggling work and parenthood. 

At this point, the living donor program is not an option.

"I don't currently have someone that is well enough to be able to be in the pool on my behalf at this time," Newman said.

"That's based on the number of people that are willing, the number of people that know this even exists. And right now, COVID makes everything a little bit more difficult." 

Living donation easier

But Newman is thankful that someone from P.E.I. who wants to help her find a kidney will only have to travel to Halifax, not two different cities as her family did.

"I think just being able to drive to where you're going is itself is a major, major thing. If we had been able to both go to Halifax, it would have eliminated many challenges for us," Newman said. 

"We would have been able to stay at the same place. We would have been able to go at the same time. We would have been able to see each other a lot faster."

Newman is also watching carefully to see the response to Nova Scotia's new system of presumed consent, that took effect in January. 

"I know that donating is a difficult topic for a lot of people. I know it's not something that anyone wants to have to talk about," Newman said.

"But if I could tell people anything, it's that it needs to be talked about. This is something that people should talk about before your family gets put in that position."

On the waiting list

Here on P.E.I., the province has an intent-to-donate registry, where you can either opt in or out of organ and tissue donation. 

There are 55,000 people on the registry. Of those, 14,640 have said they don't want their organs donated, and 16,603 have said no to tissue donation. 

"That's a lot of people saying no. I don't think people fully understand what happens, and how many people they are actually helping," said Newman. 

"They're helping people like me. I'm an educator. I'm an entrepreneur. I'm 30 years old with a five-year-old daughter. And I need a second kidney transplant."

Newman has been told it may take three to five years to find her another kidney. 

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