Turning to Facebook to find a liver donor

Karen Bell from Beckwith, Ont., has stage-four liver disease and needs a transplant, so her family set up a Facebook page and website in an attempt to find her a donor.

Karen Bell's family members have set up a Facebook page and website to help find a donor

Karen Bell, from Beckwith, Ont., is living with stage four liver disease after being diagnosed with primary billiary cholangitis, an autoimmune disorder that attacks the liver. (Saving Karen website)

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

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

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 at Toronto 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 that even 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 many people who have reached out and shown support after seeing 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 a few possible donors in the process of getting tested in Toronto to see if they match.

Undiagnosed for years

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

"I used to scratch my hands and feet and chin until they bled," she said. 

She visited doctors and dermatologists who told her to take oatmeal baths, but Bell said she always thought it was something more serious because the 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, she went to her doctor to get tested, she said.

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

Karen Bell and her husband Jamie Bell. Karen Bell's autoimmune disorder went undiagnosed for years. (Facebook)

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.

Bell said she now realizes how important it is for people to register as organ donors, after spending so much time with other sick people waiting for transplants.

Lack of awareness

An advocate for organ donations said there 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, chair of 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'

McRae said he went through rigorous testing 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, including her husband Jamie Bell, her stepdaughter and two sons, have been by her side every 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.