Turning to Facebook to find a liver donor

A Beckwith,Ont., woman with advanced liver disease is using social media to searchfor a liver donor instead of relying solely on the transplant list.

Karen Bell, 64,was diagnosed around six years ago withan autoimmune disorder called primary biliary cholangitis (PBC). The disorder causes the immune system to attacktheliver, which can lead to irreversible liver scarring andcirrhosis.

Due to the illness, which went undiagnosed for years, Bell has developed stage-four liver disease.

"These things can happen to anybody, I never thought they would happen to me," she said. "It's something for people to think about and take care of themselves."

Last summer, she was put on a transplant list atToronto General Hospital along with 200 other people after she had a medical scare.She developed hepatic encephalopathy, which can happen to people with cirrhosis, and ended up in the hospital.

'I would have to get so much worse'

Bell said thateven with her advanced liver disease, if she relied solely on the transplant list, she would have to be near death before being at the top of a list for a donated organ.

"I would have to get so much worse physically to be able to qualify," she said.

Bell's stepdaughter, Leanne Bell Giblett, created a Facebook page called "Saving Karen" and a website under the same name. The point was to spread the word about Bell's story and find her a donor after doctors suggested finding a live liver donor might be Bell's best option.

Bell said manypeople who have reached out and shownsupport afterseeing her story on social media, including a Facebook share by the Ottawa Senators hockey team, whose owner, Eugene Melnyk, received a liver transplant from a live donor.

She said there are even afew possible donors in the process of gettingtestedin Toronto to see if they match.

Undiagnosedfor years

Bell believes she's had the disorder for several yearsundiagnosed. She said her first sign something was wrong wasextremely itchy skin.

"I used to scratch my handsand feetand chin until they bled," she said.

She visited doctors and dermatologists who told her to take oatmeal baths, but Bell said she alwaysthought it was something more serious becausethe itching felt like it was coming "from inside my body."

She eventually decided to research her symptoms online and when they matched up with the autoimmune disorder PBC, shewent to her doctor to get tested, she said.

"Sure enough, that's what I had," said Bell. By then, her liver had beenbadly damaged.

The process of finding a donor has been hard, she said.

"It's very difficult because you have to recognize whoever that person is, whether it's friends or family or a stranger, they have to go through major surgery," she said.

Bellsaid she now realizeshow important it is forpeople to register as organ donors, after spending so much time with other sick people waiting for transplants.

Lack of awareness

An advocatefor organ donations saidthere is still a demand for donors.

"Believe it or not, in 2018 there is still a lack of awareness of the importance of organ donation," said Bob McRae, chairof the National Capital Region Gift of Life Network, which advocates for organ donation.

McRae anonymously donated one of his kidneys in 2009. Although organ donation rates have been improving slowly over the years in Ontario, he said, there are still many people on the transplant list.

"Until there is nobody dying from a lack of organs, it's still a big issue," he said.

'It's made me appreciate their love and support'

McRaesaid he went through rigoroustesting before he was given the green light to donate his kidney. He recovered fully from his surgery and feels like he now takes better care of his health.

Bell said her family, includingher husband Jamie Bell, her stepdaughterand two sons, have been by her sideevery step of the way.

"It's made me appreciate their love and support," she said.

In the future she said she hopes to work with organ donation campaigns and raise awareness for others who need transplants.