Sunshine Coast resident Danny Knowlton is a witty, upbeat guy – a temperament that belies a life of health problems. He was born with Alport Syndrome, a rare, genetic disorder that affects kidney function. Mothers are carriers and, while daughters are asymptomatic, unfortunately for Knowlton, sons develop symptoms.
As a result of complications from Alport, 16 years ago he underwent a kidney transplant. It turns out it would not be his last.
Knowlton had his first transplant at St. Paul’s Hospital and travelled there through the years following for regular blood work and checkups. His health was relatively stable.
Bad Christmas news: transplanted kidney was failing
But around Christmas 2022, his doctors gave him some bad news. His regular tests revealed his transplanted kidney was failing. Knowlton himself was also experiencing symptoms, mostly fatigue, so it all made sense.
As a result, he began home dialysis in early 2023 after being trained by St. Paul’s staff. That let him avoid travelling to the downtown Vancouver hospital for the procedure, which is time-consuming as it is.
Bracing for the inevitable
Yet he and his wife Nicole Arnett, both 44, knew what was coming. He’d need another kidney transplant.
They had a plan: If she was a match, Arnett would donate her kidney to her husband.
For many living donors and recipients, the process of finding a suitable kidney can be long and disappointing.
But Knowlton and Arnett were extremely lucky.
The process of testing the compatibility of Arnett’s kidney took the standard six months. Then after that, they discovered they were not only a match, but a highly compatible one at that – one in 100,000, they learned.
This was a bright spot in Knowlton’s illness, which was getting worse.
The couple’s story is profiled in the latest episode of Transplant Stories (Episode 3), which is available any time on the Knowledge Network app. The four-part series documents the intense drama and emotional highs and lows surrounding organ transplant.
Sheona MacDonald, director of the series produced by Vancouver-based Omnifilm Entertainment, and her team were given unprecedented access to operating rooms, doctors, nurses, families, caregivers and patients at both St. Paul’s (where Arnett and Knowlton’s surgery took place) and Vancouver General, which specializes in lung, liver and renal transplants. The result for viewers is a dramatic, behind-the-scenes look at the many moving parts of organ transplantation – and the legions of health-care professionals that make it happen.
A desire to demystify living-kidney donation
The decision to tell their story to the filmmakers for the series was easy.
“We really do want to help with transparency and awareness,” explains Arnett. “People had a lot of questions about the process, and we thought this was a great way to share our story. Anything we could do to take some of the fear or mystery out of the process felt like the right move.”
For Knowlton, who has always been willing to speak about the nephrology program at St. Paul’s and advocate for organ donation, it was one more way to contribute to awareness.
Getting in the zone
Were there ever moments they wanted the cameras off?
The couple says no.
Knowlton did make one small request, though. “On surgery day, July 31, 2023, I didn’t want to talk to anybody. I really had to get into the zone.”
His wife’s surgery took place the same day.
The couple says the filmmakers made them feel safe, supported and respected through the process. “They were incredibly kind and open to boundaries. We never felt imposed upon.”
St. Paul’s kidney transplant surgeon Dr. Brian Mayson, who performed the couple’s transplants, says of the series, “The impact that organ donation can have will hopefully become crystal clear as people follow the stories of these patients, and hopefully more and more people will give the gift of life by becoming organ donors.”
The health-care team was thrilled by the results. “I saw my nephrologist (Dr. Jag Gill) laugh out loud when he got our test results after the surgery, it was that successful,” Knowlton recalls. “I’ve never seen him laugh in 20 years.”
Living with one functioning kidney each, the couple often jokes about their unique situation. “It’s a freeloader, an embarrassment of riches,” Knowlton quips, referring to the kidneys Knowlton has in his body but no longer relies on. When patients receive a new kidney, the old one is not removed, to simplify things. That means Knowlton has four kidneys, three of them non-functioning. Arnett has one.
The aftermath of the surgeries was a whirlwind of emotions. Knowlton woke up the next morning feeling incredible, as if the new kidney was already functioning optimally. “They sent me home a month early because I was doing so well,” he says of his speedy recovery. Arnett, too, experienced a smooth recovery with only mild discomfort.
The couple expressed profound gratitude for the entire St. Paul’s team that supported them. “They are heroes.”
Knowlton closes the interview with an inevitable joke: “I’d say five out of five Yelp stars for kidney donations.”
To register as an organ donor: https://register.transplant.bc.ca/ Make sure to have your Personal Health Number with you.
If you think you’ve registered, but want to make sure, visit: https://register.transplant.bc.ca/verification
View the trailer for the powerful series.
Are you considering living-kidney donation? Read about it here.
Story by Ann Gibbon, Providence Health Care
