When Krista Connor was young, her dad gave her his best advice: “Just live your life.”
He had polycystic kidney disease (PKD), a genetic condition that had taken his mother when he was young and caused his kidneys to fail in his 40s. He needed dialysis – a treatment that involves removing toxins from the blood – three days a week for four hours just to stay alive.
Krista and her younger brother had a 50 per cent chance of having PKD, but her father told them they should put that fact out of their mind and just live in the moment. “He knew from experience that knowing you have this disease can take a toll,” Krista says.
Krista and her brother watched their dad juggle family life, his job as an accountant and dialysis. He got a kidney transplant in 1987, but it failed a few years later. After several more years on dialysis, he got a second new kidney, and lived with it until he died in his late 60s.
It wasn’t until the birth of Krista’s first child at age 32 that she discovered she had indeed inherited PKD. She was a teacher at the time, married to her husband Bill. After William was born in 2006, Krista had little energy and a blood test showed she had low hemoglobin, a possible sign of kidney problems.
Another test confirmed the diagnosis, and Krista’s nephrologist (a kidney specialist) explained they would monitor for signs that her kidneys were shutting down.
“You’re just waiting to see when your kidneys will fail,” says Krista, now 45. “I really understood why my dad wanted us to wait to get tested, because you’re constantly worried sick about it.”
By the summer of 2012, Krista was feeling “not quite right.” Her blood work showed her kidneys were failing, so at age 35, Krista was put on the waiting list for a kidney transplant.
Kidney recipient Krista Connor at home.
A surprise during the waiting game
Today, in Ontario, about 1,400 people are waiting for a life-saving organ transplant. Every three days, someone will die because they don’t receive one in time.
In 2012, Krista started dialysis at home. She felt exhausted, and had to monitor her fluid intake and eat a special diet with less salt and phosphorous.
Not long after, she felt unexpected movement in her stomach. “I think I’m pregnant,” she told her husband, as the sensation reminded her of carrying William. But that seemed unbelievable. The two had decided to have no more biological children to avoid passing on PKD. Plus, kidney disease is associated with decreased fertility.
When Krista found out she was six months pregnant, she was both thrilled and worried. The next few months turned into a blur of daily dialysis, weekly appointments with a dietitian and constant blood tests – all the while managing with a busy five-year-old at home.
“It was a whirlwind,” she says of that remarkable time in her life.
For the safety of Krista and her baby, Krista’s care team had planned for her to deliver at McMaster Children's Hospital in Hamilton with numerous specialists on hand, but that didn’t happen.
“I gave birth to Andrew in the ambulance on the way to the hospital,” she says. “[He] didn’t want to wait.” Fortunately, the baby was perfectly healthy.
For the next two and a half years, Krista pulled off a supermom life, caring for her two young sons, working a two-thirds schedule as a teacher and performing dialysis at home.
Her memories of her dad were an inspiration through those difficult days. “My dad was a good example of being positive and strong and just hanging in there,” she says.
Gift in the night
In 2016, Krista was checking on her sons in the middle of the night when her phone rang. “We have a kidney for you,” the nurse said. “Can you get to the hospital by morning?”
Krista and Bill arrived, nervous and excited.
“The only thing that kept me going through dialysis for those two and a half years is knowing that one day I might have a transplant and I would not have to do it anymore,” she says. “I was looking forward to a new life; a better life.”
The surgery went well and Krista was home in a few weeks, and back to work six months later. She quickly got used to taking a raft of pills every day and dealing with their side effects, which she considers “a small price to pay.”
The family could now travel – they started by heading to Alberta to visit Bill’s sister – and spend more time hiking and skiing, plus doing weekend trips to Toronto.
“Now we have the flexibility and I have the energy to keep up with them all day,” Krista says.
Back at work, Krista – who is now a guidance counsellor – began sharing her story with students at her school and others in the region and advocating for organ and tissue donation. She’s extra motivated because her brother has been undergoing dialysis for a year-and-a-half as he awaits a kidney transplant of his own.
She says that in her experience, young people are curious about her condition and open to the idea of registering at BeADonor.ca. Young or old, the idea of organ and tissue donation is a positive one for most people, she says. They just need a nudge to make the time to register.
Two minutes to save or improve a life
It takes only two minutes to register your consent to be a donor, Krista says, but it could be life-changing for the person who needs a heart, kidney, liver, lungs or other organs or tissue.
“The easiest way is to go to BeADonor.ca,” she says. “You can register your consent for organ and tissue donation, and it's stored in a database that's safe and secure – and you can change your wishes at any time.” It is also important to inform your family so you can be sure that your wishes will be known and respected, she adds.
Krista’s transplant nephrologist recently asked her to be part of the Canadian Society for Transplantation’s subcommittee on student education, so she’s sharing her ideas on how to raise awareness about organ and tissue donation in schools.
She says it’s also been rewarding to meet other transplant recipients through her involvement in local organ donation awareness groups and events – individuals who are as passionate as she is about organ and tissue donation.
This content was produced by The Globe and Mail’s Globe Content Studio on behalf of Trillium. The Globe’s editorial department was not involved.