Vernon couple champions organ donation
Married for 25 years. Loving, devoted parents to kids Matthew and Maria and to Charlie, the half-Bichon Frise, half-Havanese family dog.
Vernon’s Chris and Jacqueline Marioni are every bit the perfect match.
Except for one thing.
When it came to donating a kidney for his ailing wife, Chris was not a perfect match.
“I have a very rare blood and tissue type, so the chances of me finding a donor were rare to begin with,” said Jacqueline, 48, who, along with Chris, 51, will take part in the annual Vernon Kidney Walk Sunday at 10 a.m. at Polson Park.
It was in 2001, preparing for a half-marathon race in Vancouver, that Jacqueline first discovered she had only 40 per cent kidney function in her body. A random creatinine test, which measures kidney function, before the race discovered the results. She had no symptoms or any idea her kidneys were performing poorly.
Under strict conditions, Jacqueline completed the half-marathon, then became a regular visitor to the renal clinic in Kelowna.
Ten years after her original diagnosis, Jacqueline – whose kidneys were now functioning at 20 per cent, and, according to her, patients at 15 per cent functionality are placed on dialysis – was asked by a nurse if she had heard of the living donor program, whereby she could receive a kidney transplant.
“I hadn’t heard of it but I went to St. Paul’s Hospital (Vancouver) for an assessment,” said Jacqueline. After a thorough, intensive five-hour assessment, she was accepted into the living donor program.
First step was to try and find a donor on her own, from within her family. No luck.
Chris went through the testing, even though he knew he wasn’t going to be a perfect match because of Jacqueline’s rare blood type.
No matches, no donors. Anxiety began to creep in.
“You think you’re in panic mode and you have to fight not to get into depression mode,” said Jacqueline. “You’re hoping not to get too sick, and there’s the worry of going on dialysis...It doesn’t keep you alive forever. You can be on dialysis but your body declines.”
After going through the formal testing to be a living donor and confirming he was not a direct match for his wife, Chris and Jacqueline were told they could now be placed into the donor pairing exchange program.
That would mean Chris could be a kidney donor for somebody else, and Jacqueline could receive a new kidney from a complete stranger.
The Marionis were told it could take up to three years to find a chain of people – and a chain could involve up to 12 individuals – before doctors could match donor and recipient. Chris was told to be prepared that his recipient could be anywhere in Canada and he would have to go to their hospital. Jacqueline would be in Vancouver for her surgery.
The Marionis’ data was placed into a national data bank. At the first run of 2013 – the first one! – doctors told them they found a potential chain of people.
“It was absolutely a miracle,” said Jacqueline, fighting back tears.
There was more to the miracle.
After final testing for the match run was completed, Chris was told the recipient for his kidney would be at St. Paul’s Hospital, the same as his wife.
On Sept. 11, 2013, the Marionis – located two hospital rooms from each other on the same floor at St. Paul’s – had their surgeries.
Two months after giving a stranger his kidney, Chris, an application specialist for General Electric Health Care, was back doing all the sports he loves: yoga, running, working out, skiing, cycling, rowing, paddling and playing volleyball.
Jacqueline, who works for the B.C. Cancer Agency in Kelowna, admits the last year has been rough.
Her function still isn’t great (the kidney she received wasn’t a 100 per cent perfect match, doctors found a rare antigen during the chain testing but said they would have done the transplant anyway if she still wanted to go ahead), but she feels better and healthier even if the lab tests say otherwise.
There’s no way the Marionis would miss Sunday’s Kidney Walk. Jacqueline will have a booth set up to talk about organ donation.
“One in 10 people in B.C. have kidney disease that we know of,” she said. “I didn’t know I had symptoms of kidney disease so the number is likely higher. Eighty-five per cent of people in B.C. believe in the organ donor program but only 15 per cent are actually signed up. We need organ donors. The only way to cure kidney disease right now is transplantation.”
“So many people when you talk to them about it, they say ‘oh they wouldn’t want my organs,’” said Chris. “There is always something they can take. They won’t take it if they don’t want it. And you can’t use your organs after you die.”
When she gets healthier, Jacqueline wants to be a spokesperson that goes to high schools and gives a talk on the importance of organ donation, especially seeing as how she’s a recipient.
Sunday’s Kidney Walk is open to everyone. Registration starts at 9 a.m. and the walk begins at 10.
As Jacqueline states, it’s not about how many laps or finishing. It’s about taking part.
Information can be found online at www.kidneywalkinbc.ca.