Kelly Johnston has been living on borrowed time for the last 30 years.
The New Westminster resident has been on B.C's transplant list three times, twice for a kidney and once for a heart.
The odds of receiving the latter are slim - about less than one per cent.
Her chances would improve dramatically if more people who support organ donation put their money where their mouth is. Ninety-five per cent of British Columbians are in favour of it, according to B.C. Transplant statistics, but only 20 per cent have actually registered their decision.
Until things change, Johnston continues to wait.
The year was 1985. Johnston, who was 21 at the time, had attended a party with friends one evening. The next morning when she woke up, she found herself gasping for air.
"I couldn't breathe because my lungs had filled with water. My dad took me to emergency at Burnaby Hospital. All they said was, 'There's a bed waiting for you a VGH. Do not stop or we will take you by ambulance,'" Johnston told the Record.
After running some tests, doctors discovered her kidneys were failing, and unless she received a transplant, she'd be dependent on a machine for the rest of her life.
"I said, well no, I have to go to work at five," she joked during the interview. "They said, 'Well if you can walk to the door, we'll let you go.' I said 'Not a problem.' I didn't make it out of bed."
The then young adult was on dialysis for the next 10 months, hooked up to a unit that performed the same function as her kidneys - removing waste, salt and extra water from her system, while maintaining a healthy level of chemicals like potassium and sodium.
Both organs eventually had to be removed, forcing Johnston to be placed on B.C.'s transplant list. She was one of the lucky ones, though. Only a week after her name went on the list, her doctor called with good news.
"They told me they had found a match, which is very unheard of," she said.
A sobering reality, however, set in for Johnston when she was told post-op to refrain from any physical activity. Favourite sports like skiing were out of the question.
"I'm like 'That doesn't really work for me.' I wanted to go back to Whistler because I had been living there. They said, 'No, you can never do anything like that.'"
After finding a new doctor at Vancouver's St. Paul's Hospital, Johnston's outlook on life changed.
"I had a chat with Dr. David Landsberg, and he said, 'You know what, you are going to live your life. It doesn't matter what happens to you. You've got the gift of life."
And so it went. Johnston ended up working in the entertainment business for celebrities like Clint Eastwood and film director Oliver Stone. Her job carried her all over the world, including a three-year stint in California. She hiked, played sports and continued to check off bucket list items.
But on Jan. 19, 1998, roughly 13 years after her transplant surgery, Johnston felt ill. Blood work later revealed her body was rejecting the donated kidney, something she admitted she wasn't at all prepared for.
"It was like being told you're terminal, because you are, and having experienced dialysis before, I knew what I was going to have to go through."
The next two-and-a-half years proved to be "horrific." Johnston, who had to be fed through a tube, vomited anywhere between 40 and 50 times a day, losing half her body weight as a result. She even experienced three mini-strokes.
"They came to me and said you need to get your affairs in order, we don't think you're going to make it through the week," she said. "I went to my next dialysis session basically knowing it would probably be my last one."
But as luck would have it, the good news phone call came through once again.
Johnston described waking up after her second kidney transplant as "an incredible feeling."
"You're finally warm. Being on dialysis makes you really cold from the inside out," she said, adding the No. 1 thing she craved was a glass of milk.
Fifteen years later, Johnston's organ is still in functioning order. Having been on dialysis on and off over the years, however, created a new health problem for the local.
In 2006, Johnston felt something was off when it came to her heartbeat, like "someone tap dancing on one part, while the rest of was trying to keep up, doing the waltz."
Doctors diagnosed her with atrial fibrillation (an irregular heart rhythm) and mitral valve stenosis, caused by, in Johnston’s case, calcium build-up from dialysis.
"Dialysis leaches calcium from your bones, but because it's a solid, it doesn't have anywhere to go, so you end up with bone spurs on tendons, joints and muscles, and the heart is a muscle," she explained.
Even though she has a pacemaker to keep the A-Fib under control, Johnston's heart will eventually stop as the muscle gets weaker and weaker.
"I could be sleeping when it happens, or I could be out. I really don't think about it. I'm so resigned to the fact that whatever happens, happens," she said. "I've had 31 years that I should have never had. I've had this incredible life. I'm not going to sit around and go, 'woe is me.' That is not my personality. I just think about how lucky I am to be alive in a time where science is keeping me alive."
Johnston was put on the transplant list for a heart last December, but because her body contains a high level of anti-bodies and her blood type is O positive, the self-proclaimed optimist told the Record her chances of receiving a heart is less than one per cent.
Despite the odds, Johnston is hopeful she'll get that phone call. In the meantime, she wants people to go online and register themselves as organ donors.
"It's the last thing you can do to be kind in this world," she said.
There are a few reasons why people don’t register, according to Peggy John, B.C. Transplant's manager of communications and community relations.
Like writing a will, people put it off, John said. A sticker system that was phased out in 1997 is another reason.
“There are still people who have that sticker and think they’re still registered,” she added.
Age and illness are other contributing factors, as well as the thought of “if something happens to me, are they actually going to try and save my life? Will I go through Door B?”
There are 465 British Columbians waiting for an organ transplant right now, according to B.C. Transplant's website. On average, 230 Canadians die each year waiting. One donor has the ability to save up to eight lives (the oldest was 93).
In New West, 12,235 residents are registered organ donors, less than a quarter of the population.
To sign up, visit www.transplant.bc.ca. To support Johnston, a crowd-funding campaign has been set up to help pay for her medical bills. Go to http://www.gofundme.com/HaveaHeartforKelly to donate.
