N.B. woman never expected to have to fight to donate kidney to cousin in Ontario

When Susannah McKenzie-Sutter heard her relative successful Ontario needed a kidney transplant, the 28-year-old Saint John pistillate didn't hesitate to connection 1 of hers.

She hasn't kept successful adjacent interaction with McKenzie Smith successful caller years but has fond puerility memories of spending summers with her "cool older cousin." 

Preliminary humor tests showed she's a bully match.

But McKenzie-Sutter quickly learned her plans could beryllium thwarted due to the fact that she's 1 of thousands of New Brunswickers without a household doctor.

The infirmary successful London, Ont., wherever the transplant would beryllium done, told her she cannot donate — oregon adjacent get tested to corroborate she's a bully campaigner — without having a family doc oregon a caregiver practitioner.

WATCH | 'That was a big, large shock.' 

"That was a big, large daze and I decidedly felt rather frustrated," McKenzie-Sutter said.

Her 40-year-old cousin in Kitchener is successful end-stage kidney failure.

Smith has a familial signifier of chronic kidney disease, which progresses slowly, often without symptoms, until unsafe levels of fluid, electrolytes and wastes, specified arsenic urea and acids, build up in the body.

Her kidney relation has dropped to astir 8 per cent. She is easy fatigued and requires respective medications to negociate her symptoms, specified arsenic anemia and precocious humor pressure.

"Being forced to face my ain mortality is scary," Smith posted connected the Transplant Ambassador Program website and connected societal media successful mid-January, seeking a unrecorded donor.

Her doctors predict she volition beryllium successful afloat kidney failure within two oregon 3 months, Smith said successful an interview.

2,450 Canadians connected waitlist for kidneys

The median hold for a deceased kidney donor successful Canada is much than 3 years, according to the Canadian Institute for Health Information.

As of the extremity of 2023, the astir caller information available, about 2,450 Canadians were connected a waitlist. Eighty-five radical died waiting that year.

Without a transplant, Smith will soon person to spell connected dialysis — either hemodialysis, usually done astatine a aesculapian centre 3 days a week, 4 hours each day, oregon peritoneal, which tin beryllium done astatine location overnight but indispensable beryllium done daily.

"That was decidedly bittersweet to hear," McKenzie-Sutter said. "I didn't recognize however atrocious it had gotten. And truthful I wanted to beryllium capable to assistance if I could."

She reached retired to Smith that day.

Genetic kidney illness runs successful the family, and McKenzie-Sutter knows first-hand however life-changing a transplant tin be, she said.

Her maternal gramps had a transplant from a car mishap victim in the 1970s — one of the earliest transplants successful Canada. Her aunt — Smith's parent — and Smith's sister have had surviving donor transplants.

It gave them their lives back, McKenzie-Sutter said, describing beingness connected dialysis arsenic restricted and difficult.

Smith was overwhelmed by her cousin's generous offer. "It's conscionable specified an astonishing happening and specified a acquisition to springiness to someone," she said.

Post-transplant monitoring required

Neither relative ever imagined McKenzie-Sutter's deficiency of a superior attraction supplier could go an obstacle.

But imaginable surviving donors indispensable person a implicit aesculapian checkup to corroborate they are steadfast capable to donate.

In addition, they require annual checkups aft the donation to guarantee their remaining kidney is moving correctly since it has to work harder to marque up for the removed kidney, McKenzie-Sutter learned from the London Health Sciences Centre.

Nurse practitioner near a twelvemonth ago

The request for ongoing attraction "does marque consciousness to me," she said. "But I was precise amazed due to the fact that I cognize there's specified a shortage [of household doctors and caregiver practitioners], particularly out here successful Atlantic Canada."

Her spouse precocious mislaid his household doc to retirement, and she hasn't had 1 since she moved to Saint John from Newfoundland and Labrador successful 2020 aft completing a master's grade successful music. A nurse practitioner she found left the province in April 2024.

Since then, McKenzie-Sutter has been registered with N.B. Health Link, which replaced Patient Connect N.B., the waitlist for doctorless patients, and aims to supply patients with entree to primary-care providers offering in-person, telephone and online appointments.

She has never received an email oregon telephone call, she said.

41,000 registered with N.B. Health Link successful limbo

More than 65,000 New Brunswickers are registered with N.B. Health Link and eligible to person superior care through it, according to the Health Department.

An further 41,000 are registered but waiting for much clinics to unfastened oregon for existing clinics to expand.

"This is, without a doubt, a stressful concern for this individual," David Kelly said successful an email connected behalf of the department.

"The section is examining the kinds of superior attraction options that could beryllium disposable to her.

Improving entree to superior attraction is simply a priority, Kelly said, pointing to Premier Susan Holt's pre-election pledge to unfastened 30 collaborative health-care clinics, including 10 successful 2025, Saint John among them.

'Poignant reminder'

McKenzie-Sutter said it's been hard and "a spot scary" trying to navigate the health-care strategy without a superior attraction provider, but wanting to donate her kidney has made the contented adjacent much pressing.

And she's not alone, she said. She was told astatine slightest 1 different New Brunswicker was antecedently consenting to donate successful London, but was turned away because they didn't person a superior attraction provider.

"The challenges patients look trying to navigate the surviving organ donor process without a household doc is simply a poignant reminder of the wide impacts of the superior attraction crisis," said Dr. Lise Babin, president of the New Brunswick Medical Society and a household doc successful Dieppe.

"This is different crushed wherefore it is truthful important for each health-care stakeholders to prioritize improving superior attraction access, done team-based clinics, enhanced retention and recruitment strategies, and each different means astatine our disposal."

Advocacy urged to alteration 'gift of life'

Rosanna Mitchell, enforcement manager of the Kidney Foundation of Canada's Atlantic branch, called the concern "concerning — especially for those who are successful request of kidney transplant and person idiosyncratic consenting to measurement up and marque that live donation, fundamentally giving the acquisition of life."

People should interaction section politicians to "advocate for the household doc situation to beryllium earnestly considered," Mitchell said.

"We conscionable person to support ringing the doorbell with our members of authorities to punctual them however important that portion is."

Delay adds to deterioration

McKenzie-Sutter hated breaking the quality to her cousin.

"I decidedly felt similar I was letting her down."

She called astatine slightest 14 clinics, desperately trying to find a doctor, but galore of them didn't adjacent fto her decorativeness her plea.

"They're like, 'Sorry, we're not taking immoderate caller patients. We're perfectly booked.'"

Smith admits it's "absolutely disappointing" McKenzie-Sutter faced specified challenges trying to bash thing good.

"And with thing similar kidney disease, arsenic you tin imagine, it's precise time-sensitive," she said. "My relation is deteriorating a small each time and each time that goes by, wherever there's a hold oregon there's thing that we request to hold on, that affects maine negatively, and I consciousness bittersweet and disquieted the longer it takes."

Doctor found

Fortunately, McKenzie-Sutter said, she has finally, done a friend, recovered a doc consenting to instrumentality her connected aft weeks of scrambling. She has an assignment April 2 and volition statesman the screening process soon after.

She precocious completed humor and urine tests, which indicate her kidney relation is good.

And successful mid-May she volition question to London for 2 days of testing, including a renal scan, electrocardiogram or EKG and a thorax X-ray.

Only interest is getting screened-out

"I'm not truly disquieted astir it due to the fact that it's rather thorough testing," she said. "So if there's thing to beryllium acrophobic about, I would find retired successful the investigating process," said McKenzie-Sutter, who described her household arsenic supportive.

And the surgery itself is "low risk," she said — comparable to a gallbladder removal. It's present done laparoscopically, with three small incisions and a thin, lighted conduit with a video camera.

McKenzie-Sutter, who is self-employed arsenic a violinist and euphony teacher, volition look immoderate question expenses and won't beryllium capable to enactment for 4 to six weeks during recovery, but she believes Ontario's reimbursement programme for surviving organ donors will screen astir of that.

"To beryllium honest, I'm lone disquieted that I'll get screened out," she said.

"That's the happening that's much nerve-wracking due to the fact that I cognize that would conscionable prolong McKenzie's wellness concern longer. And I would consciousness atrocious that we spent each this clip investigating maine erstwhile it could person been spent investigating idiosyncratic else."

Smith said she'll ne'er beryllium capable to repay her and volition beryllium everlastingly grateful.

McKenzie-Sutter said Smith doesn't beryllium her anything. "If I tin help, I would similar to, and I would anticipation that idiosyncratic would assistance maine if I was successful a akin situation.

"It conscionable feels to maine similar the close happening to do."