She’s been an educator and a guinea pig.
Vernon’s Jacqueline Marioni has failing kidneys and she’s already had two transplants.
The first transplant, in 2013, from a stranger, rejected her. The second, which came from her sister, Kathy, in 2015, is rejecting her.
Marioni, 53, has been poked, prodded and examined trying to find out why the kidneys are rejecting her. She’s had chemotherapy. Her spleen has been removed.
Her kidney function is wavering between 10 and 12 per cent. She faces dialysis which, she said, a year of dialysis is akin to 10 years of life.
“It’s not a great prospect. I hope research catches up soon,” said Marioni, who will be joined by her husband, Chris – himself a kidney organ donor to a complete stranger as he was not a perfect match for his bride – her dog, Charlie, and several friends in taking part in the annual Kidney Walk this Sunday, June 7.
Both kidneys Marioni received from donors were perfect matches on paper.
“Why is it failing?” she asked. “My doctor team, well, this one in particular, his job is to do trials and go to conferences. Wherever he went he would present me to see if there’s anyone else like me out there.”
Marioni’s blood was sent to the Los Angeles Research Centre and it was discovered Marioni has anti-endothelial cell antibodies, a family of antibodies that reach with endothelial cell antigens.
“When I get a transplant, the cell automatically rejects it,” she said. “There’s nothing to switch off the cell.”
The problem is, there’s an awful lot of red tape and cost associated with sending even one sample out of Canada. The United States has more variety of research machines.
Marioni, a prime example why funding is needed for such research, receives intravenous immunoglobulin (IVIG), a therapy treatment for a patient with antibody deficiencies, every two weeks, and it seems to have slowed down the transplant rejection.
The Marionis champion organ transplants and have become fixtures at the local Kidney Walk, missing only a few events over the years.
“We’re doing it to show kidney patients we’ve got their backs,” said Marioni, who, along with her husband and dog, will be decked out in a Kidney Walk shirt.
Albeit, this year’s walk is a bit different.
“We’re not having a person-to-person walk this year to keep everyone safe,” said Sid Adams of the North Okanagan chapter of the Kidney Foundation of Canada, referring to the COVID-19 pandemic. “It’s a virtual walk as the need for help for kidneys goes on. People can walk around their block, or wherever and however they feel safe.”
British Columbia and Yukon participants have joined forces with Kidney Walks across Western Canada this Sunday, June 7, in an act of solidarity.
“Branches in B.C., the Yukon, southern Alberta, northern Alberta, the Territories and Saskatchewan are coming together for a virtual version of our traditional Kidney Walk celebration,” said Pia Schindler, executive director, B.C. and Yukon branch. “Kidney patients need us now more than ever. There is no other way.”
The Kidney Walk campaign always brings together patients, their friends and families, health care workers, researchers, and the public to honour and celebrate everyone impacted by kidney disease and organ transplantation.
While this year’s Kidney Walk community won’t physically meet, the Kidney Walk celebration will go online using Facebook Live (facebook.com/kidneybcy) and YouTube (subscribe to youtube.com/c/kidneypluggedin).
For more information on the Kidney Walk or to register, please go to kidneywalk.ca.