This woman needs a new liver. She has been fighting it for 27 years, but time is running out.

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

At age 29, the Maddox Cove resident was diagnosed with primary biliary cholangitis, an autoimmune disease of the liver that causes the bile ducts to become inflamed and destroyed.

Doctors told her she had two years to live.

Those last two years had made her 27. But now Hong, 56, said she was returning to her younger roots.

As the disease progressed and he developed pulmonary complications, he now required full-time oxygen use – without it he could neither walk nor talk.

Hong is racing against time and opportunity to find a living liver donor.

“I'm now facing a liver transplant because that's the only way to cure this lung complication,” Hong told CBC News in a recent interview.

She knows finding a living donor will be a challenge, but it's her last resort: If she can't find a liver donor, she won't survive another 12 months, maybe not even six.

“The transplant center said to me, 'Look, listen, you need to go public with this,' and so here I am.”

Not defined by diagnosis

Hong's life expectancy was uncertain for more than 20 years.

Though she didn't think she would live past 31, she was determined not to let her diagnosis define her and to live a fulfilling life, however long she lived.

“For a guy in his 20s, that's a pretty big statement,” Hong said.

Despite her illness, Hong says she maintains a positive attitude and makes the most of each day by traveling and experiencing the world.

Traveling allows her to live a double life, she said: one as a sick person and the other as a tourist unaware of reality.

“I think if I go somewhere, I can pretend I'm not sick. No one knows me there, and for better or worse, as long as I've had this disease, I've never looked like a sick person,” Hong said.

“It was like I was tricking my body, saying, 'I'm OK, I'm OK,' because there's a lot of medical testing and the reality of this part of life while I'm here.”

Stay positive

Hong had been trying to encourage his friends to climb Everest, but his health was deteriorating.

She began to have difficulty breathing. Over the past six months, Hong's breathing continued to deteriorate, leading to the need for a liver transplant.

“Since last week, I have needed constant oxygen just to walk around and talk,” Hong said.

This month, she plans to move to Ontario to be closer to the hospital where the transplant will be performed while she waits for word that doctors have found a compatible donor.

Living Organ Donation

In a living donor transplant, people between the ages of 16 and 60 who are in good health can donate part of their liver to someone on a transplant waiting list.

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

“The amazing thing about the liver is that it has the ability to regenerate and grow back to its original size within three months of surgery, both in the organ donor and in the organ recipient,” Selzner said.

In the program's 24-year history, 1,300 living organ donation procedures have been performed, with no fatalities, Selzner said.

“We don't select donors who we deem too high-risk for this procedure,” she said, “and we would never put the lives of people at risk in an effort to save others. So we have a zero mortality rate, and it obviously helps the recipients by not dying and being able to get a transplant at the right time.”

Hong's matches will require that people be healthy, between the ages of 16 and 60, have a BMI below 30%, live in North America, and have type O blood.

Hope for the future

Hong said she is staying positive and not getting her hopes up because donating her liver could potentially give her a new life.

“Once I get through this little, no big hurdle of a transplant and finish taking all the new medication I'm going to be given, I'm sure I'll get better,” Hong said.

Hong says the first place he wants to visit once he recovers from his transplant surgery is Bora Bora, but he might have to start with a trip to Bonavista.

“Don't get me wrong, there were times when I was really sick, but I should have died and I didn't, so I guess I'm destined to continue living beyond 2024,” she said.

“Let's start small. Bonavista, Bora Bora. That's the plan.”

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