Karyn Sharp has been living with one of her mother's kidneys for 26 years.
She discovered her kidneys were failing as a scared 17-year-old after signing up for her very first blood donation.
Months later, after her mother was approved as a match, Sharp jumped the waiting list - an increasingly common option for kidney transplant patients who turn to living donors.
But Sharp's story isn't typical for B.C. transplant hopefuls. The province has the longest median wait time for kidney transplants at just under five years. Not everyone waiting for a kidney is on dialysis (a method of cleaning the blood because the kidney no longer functions), but almost half of Canadians on dialysis will die after four years using the common treatment for end stage kidney failure.
"There's a reality that my kidney won't last forever and there will be a point where I will probably have to have another donation or be on dialysis again," said Sharp, now 44.
"The medicine you're on also damages the rest of your organs and shortens the life of the organ itself," said Sharp. "The hope is just to be as healthy as possible."
As Diane Duperron, president of the Kidney Foundation of Canada's local chapter said, "a transplant is not a cure, it's only another form of treatment. People don't understand that."
Sharp dreads the idea of returning to dialysis. Depending on the person, patients visit the local clinic two to four times a week, hooked up to the machine for hours.
"You're so tired, you're so exhausted with kidney failure and you really don't have much endurance to do anything."
This year she joined Duperron's group to get more involved in combatting kidney disease, which affects one in 10 Canadians.
"I definitely think raising awareness for donations is extremely important because the causes for kidney failure are rising," said Sharp, noting many don't realize they have it until, like her, their kidneys are close to failure. "It's a silent disease."
With only 19 per cent of the province's population signed up as organ donors, Sharp along with other members of the Kidney Foundation of Canada headed to its first-ever Kidney Summit on Friday in Vancouver, to discuss ways to address the the gap in donors and demand for kidney patients.
High blood pressure and diabetes can lead to kidney disease, family history is a clear marker, and it's a problem that disproportionately affects aboriginal populations, as well as South and East Asians who the summit jury agreed face both cultural and systemic barriers when accessing the same quality of health care as the rest of the population.
"I think people want to do it," said Sharp of organ donation, "but they don't realize the extra steps you have to take to register."
Presumed consent
A jury of eight medical, legal and policy experts urged the province to make that process easier through a policy of presumed consent.
It would shift the current system where donors register to one where every citizen is signed up and must opt-out if they don't want their organs used.
At the summit, participants heard the numbers registered are far below those who say they want to be organ donors - 95 per cent - and the 51 per cent who believe they are already signed up. Prince George is one of the provincial leaders, with 24 per cent of its citizens signed up, tied with Kamloops and leaps ahead of Greater Vancouver's five per cent, according to data from October 2014.
B.C. just made it so people could sign up as organ donors at any of the 61 service centres where people get driver's license or other forms of identifications.
When countries made the move to presumed consent, they saw their donor numbers jump between 20 and 30 per cent, the summit heard.
One doctor cautioned the donor-by-default approach cannot solve all Canada's problems.
The successful countries paired that approach with an increased investment in critical care, something Canada's health centres need, said Dr. Stephen Beed, the medical director of Nova Scotia's organ and tissue donation program.
"I can tell you in a broad sense, the health community does not know about donation and transplantation," said Beed, adding he thinks the many viable organs are lost because health care workers are afraid to ask the question of the deceased's families or are too overburdened to spend the time required to save the organs.
"The real problem, from a system point of view is not the consent, it's in the referral of the potential donor, the identification of the potential donor."
Summit participants also heard Canada is doing a better job of catching kidney disease early, which can improve patient health later in life.
Almost 13,500 British Columbians have kidney disease, but don't require dialysis, according to the B.C. Renal Agency.
People are diagnosed in the early stages at a rate of 13 per cent, but the dialysis population is only increasing by three per cent, said Dr. Adeera Levin, the agency's executive director.
"That says we're getting people early and it says we're probably also delaying progression, and those two things, I think, are very important," said Levin.
Levin also applauded B.C. for having 33 per cent of kidney patients on some form of independent dialysis, rather than the lengthy hospital visits, the highest rates in Canada.
But for the almost 3,000 British Columbians on some form of dialysis, getting more organs is the essential solution, said David Landsberg, medical director of Kidney Transplantation for BC Transplant.
"Kidney transplant is the best treatment for kidney disease," said Landsberg, who was arguing for presumed consent.
Landsberg said a new program is finally giving hope to the 20 to 30 per cent of kidney hopefuls perpetually on the waitlist, who can only be matched with one per cent of kidneys.
"Up until very recently we were very siloed. Each province had their own waitlist," he said.
Finding best match
Diane and Paul Duperron started the Prince George chapter of the Kidney Foundation in 2006, the year before Paul started dialysis and his wait for a kidney transplant.
When he finally got his match in 2011, he had troubles with his deceased-donor kidney right from the get-go.
But with presumed consent, not only will it lead to shortened wait times, it could lead to better outcomes, Landsberg said.
"The more donors, the more possibility that people have to be compatible and therefore the amount of help we can do for people that are in really desperate shape," said Landsberg, noting first-time transplants have the best outcomes so it's important they are also the best match possible.
Living donors also often lead to better outcomes, and Landberg said B.C. has started pairing people who don't match their family members to other pairs looking for a kidney match.
In 2014 there were 205 kidney transplants in BC, 101 from dead donors, and 104 from living donors. Eighteen of those transplants were patients from the north, who would have had to travel to Vancouver for their transplant at either St. Paul's Hospital or Vancouver General Hospital.
For northerners the distance can be a barrier, but Diane noted the foundation offers suites for up to two months to transplant patients at $25 a night for those at a certain income or free for those who can't afford it.
The foundation is also looking into ways to make it so that its easier for living donors don't have to cover the costs of their travel and time off work.
In Prince George, they plan events and have a monthly support group open to the more than 100 members, a sizable leap from the six who started the group.
"It usually helps," said Paul of talking to others with kidney disease. "They're living it rather than just listening to a doctor or nurse."
Exercise is important said Paul, noting only healthy patients can get transplants.
"It's good for the emotions as well because that's another big downer for kidney patients is you go into kind of an emotional downslide," he said. "Not everybody handles devastation."
They regularly visit Prince George's transplant clinic, which has 94 clients, both for Paul's dialysis and to visit with patients.
"You end up being one big family," he said.
"As your body weakens of course the less you want to do and the less you do, and then you get into the downward cycle," said Paul. "We try to turn people in the other direction, get them perked up, let them know that they can live (with kidney disease)."
Editor's note: The Prince George chapter of the Kidney Foundation of Canada paid for the reporter's flight to the Vancouver-based summit.
