This woman needs a new liver. She's beaten the odds for 27 years — but time is now running out

For the second time in Janet Hong's life, a time limit has been placed on her life.

At 29, the Maddox Cove woman was diagnosed with primary biliary cholangitis, an autoimmune disease of the liver where bile ducts are inflamed and destroyed.  

Doctors told her she had two years to live.

Those supposedly final two years she turned into 27. But now, at 56, Hong said she's back to where she started as a young woman. 

The disease has progressed, and she has developed an additional pulmonary complication, which requires the full-time use of oxygen. Without it, she can't walk or talk.

In a race against time — and chance — Hong is searching for a live liver donor.

"I am now faced with a liver transplant because that's the only way to fix this pulmonary complication," Hong told CBC News in a recent interview.

She knows the search for a living donor is a big ask, but it's her last resort. If she doesn't find a liver donor, she won't survive another 12 months. Maybe not even six.

"The transplant centre told me, 'OK, listen — you need to go public with this.' So here I am."

Not defined by diagnosis

Hong's life expectancy has been uncertain for more than two decades. 

When she didn't expect to make it past 31, she decided her diagnosis wouldn't define her and that she'd live a good life, no matter how long she had.

"When you're a kid in your 20s, that's a big thing kind of to say," Hong said.

Despite her sickness, Hong makes every day count, she says, by keeping a positive attitude and filling her life with experiences by travelling the world.

Travelling allows her to live a double life, she said: one in which she's a sick person and one in which she's a tourist whose reality no one knows.

"When I go away. I guess I can fake that I'm not a sick person. Nobody knows me there and for better or worse, as long as I've had this illness, you know, I've never looked like a sick person," Hong said.

"It was like me tricking my body. 'Hey, things are good,' you know, because when I'm here there's a whole lot of medical testing and the reality of this part of my life."

Staying positive

Hong was trying to convince her friends to climb Mount Everest when her health took a turn.

She started having trouble breathing. In the last six months, Hong's breathing has continued to decline, making the liver transplant a necessity.

"Only last week I started to have to take full-time oxygen to even walk around and talk," Hong said.

This month, she is moving to Ontario so she can be near the hospital that will perform her transplant while she waits for the call saying doctors have found a matching donor.

Live organ donations

Living donor transplantation allows those in good health between the ages of 16 and 60 to donate part of their liver to a someone on the waiting list for a transplant.

Dr. Nazia Selzner, medical director of living donor liver transplantation at Toronto's Ajmera Transplant Centre, says it's a common procedure, and the liver regenerates itself.

"The beautiful, amazing thing about the liver is that it has the capacity to regenerate or grow back to full size within a period of three months following the surgery, both in … the donor as well as in the person that receives that organ," said Selzner.

In the program's 24-year history, Selzner said, they have performed 1,300 living donor surgeries with no deaths.

"We won't select a donor that we feel would be too high risk for this procedure," she said. "There is no way that we jeopardize someone's life who tries to save someone else — so the mortality is zero and for the recipient, it obviously helps them to not die and get a transplant in a timely manner."

Hong's match must be in good health, be between the ages of 16 and 60, have a body mass index of 30 per cent or less, reside in North America, and have type O blood.

Hope for the future

A liver donation could give Hong a new lease on life, so she's keeping a positive attitude without getting her hopes up, she said.

"Once I get through this little — large — hiccup of a transplant and all the new drugs that will be coming at me, I think it's gonna be great," Hong said.

Bora Bora is the first destination Hong wants to visit once she heals from her transplant, she said — but she might have to start by travelling to Bonavista first.

"There have been times when I've been really sick, don't get me wrong, but you know, I should have died, and I haven't. So I guess I'm meant to keep on going past 2024," she said.

"Start small: Bonavista, Bora Bora. That's the plan."

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