Nova Scotia

She wants to give her friend a kidney, but donation rule means she can't be tested

Two Nova Scotia women are questioning why people in the Atlantic provinces who want to be live kidney donors must have a primary care provider just to be tested for compatibility. They say lives could be improved if there were changes to the rule.

All potential living kidney donors in Atlantic Canada must have a primary care provider

Brenda MacKenzie (left) and Bonnie Ste-Croix have been friends for years. Ste-Croix initially didn't tell MacKenzie she was going to try to get tested to see if she could donate her kidney. (Submitted by Bonnie Ste-Croix)

When Bonnie Ste-Croix of Halifax learned that one of her good friends, Brenda MacKenzie, needed a kidney transplant, she had no hesitation. 

Ste-Croix called the Atlantic region's living kidney donor program and asked to be tested to see if she could be a possible match.

"All I'd like to do is see if I can help," she said.

But more than a year after her offer, Ste-Croix still doesn't know if she could be a donor. Her application was stopped just a few questions in, when Ste-Croix told the co-ordinator her family doctor had just retired.

"They were like, 'Oh, we can't proceed then,'" said Ste-Croix. "I was completely shocked in the moment."

Years-long wait for transplant

There are 180 people in the Atlantic region on the transplant list. A further 127 people are going through the process to be added to the list.

They wait an average of 2½ to three years for their transplant.

But if someone in their life wants to be considered for what's known as a living donation, they must have a primary care provider. It's a requirement for any potential live donor in the Atlantic region, along with being over the age of 19 and in good health with a healthy weight. 

In Nova Scotia alone, more than 60,000 people are registered to find a primary care provider.

"For months, this has bothered me," said Ste-Croix, who urgently wants to help her friend. "Is that a reasonable criteria to have? Can we please really, sincerely, look at this?"

Ste-Croix says her friendship with MacKenzie is built on years of joy and laughter. She says she'd do anything to help MacKenzie feel better, including donate one of her kidneys. (Craig Paisley/CBC)

The caveat was a blow to MacKenzie, who depends on dialysis for four hours at a time, three nights a week.

MacKenzie has polycystic kidney disease, where cysts develop in the kidneys and the organs eventually lose their function. It's genetic. Both her mother and brother have had successful transplants.

4 potential donors step forward

When MacKenzie's health started declining, she knew she would be following the same path. Four people came forward offering to help.

"It still makes me emotional," she said. "I tear up about it. What a huge gift that someone could be willing to do that."

Of the four offers, two were not compatible matches. The other two didn't have a primary care provider.

"Right off the bat you're ruling out a great percentage of the population that could be a live donor. That's really hard to understand," MacKenzie said.

"Your heart sort of sinks because you know there's no fast answer to this, right? Even if you have a doctor, the process can be long. Not having a doctor is a whole other thing. Is it really necessary?"

Followup requires primary care provider: NS Health

Nova Scotia Health declined to do an interview, but said in emails the requirement to have a family doctor has always been in place. The policy has been updated to include nurse practitioners as primary care providers if donors are unable to find a physician, it said. 

"Often the testing during the work up for live donation reveals other health concerns that require further investigation and followup that the primary health-care provider would manage," it said.

Nova Scotia has put new emphasis this year on transplants.

In January, it became the first jurisdiction in North America to switch to a presumed consent organ donation system, where people opt out of giving if they end up in the rare circumstances where they qualify to be a dying donor.

MacKenzie says she's touched that so many people have come forward, offering such an incredible gift to help her. (Dave Laughlin/CBC)

Nova Scotia Health said the live donation program is testing 100 potential donors at any given time. There are about 20 to 30 live donations a year.

"We are always working to increase the number of donations," it said.

Ste-Croix and MacKenzie want to see a new conversation. They're wondering if a walk-in clinic could temporarily take on patients just to get them through the screening process.

"If she's not the one, that's not the point," MacKenzie said of Ste-Croix. "The point is that will mean a lot more people will be able to go through organ donation. That's my hope."

The Atlantic branch of the Kidney Foundation of Canada said it's unaware of any other cases where a potential donor could not be screened because they did not have a family doctor.

The organization encouraged people to reach out if they have faced the same challenge.

'I'm going to stay positive'

After two years on the transplant list, MacKenzie said she's going to be patient.

Her physician managed to find her other friend a new doctor, but unfortunately she was also not a compatible match. That leaves just Ste-Croix as a volunteer for a potential live donation. 

MacKenzie is hopeful Ste-Croix will eventually be tested, but she's convinced at this stage that she'll be receiving a kidney from a stranger. 

Her brother waited seven years for his match. She knows the process will take time.

"I feel positive," she said. "And I'm going to stay positive that something is going to happen for me and I will get a kidney."

ABOUT THE AUTHOR

Carolyn Ray

Videojournalist

Carolyn Ray is a videojournalist who has reported out of three provinces and two territories, and is now based in Halifax. You can reach her at Carolyn.Ray@cbc.ca

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