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Jillian Di Bernardo’s search for a life-saving liver donor made national headlines.
The London woman’s social media plea went viral.
Even the Ottawa Senators hockey club asked its fans to help the 28-year-old hairdresser, just like the NHL team did for its billionaire owner Eugene Melnyk last spring.
It hasn’t been enough.
Still waiting for a donor, time is running out on Di Bernardo.
A handful of friends and family members have taken a battery of tests only to find out they’re not compatible to donate part of their liver. A cousin in Sudbury also learned he isn’t a match.
Now, her health rapidly deteriorated, Di Bernardo weighs just 50 kilograms and has to have her swollen abdominal cavity drained weekly.
“Some people don’t even recognize me. It’s easy to forget how different I look on the outside, because I still feel like myself on the inside — sometimes,” she said.
Once a yoga-loving twenty-something in good health, Di Bernardo’s life changed five years ago when she was diagnosed with hereditary hemorrhagic telangiectasia, a disease affecting her liver.
Doctors put her on the liver transplant list as her condition worsened, but later took her off when an experimental drug showed signs of success. It worked for four years until her symptoms returned last year, when she was put back on the list.
But there’s a shortage of available organs for patients needing them.
Eighty-six of the 498 people on Canada’s liver transplant list died waiting for an available organ in 2013, according to the Canadian Institute for Health Information.
Knowing she may die before her name comes up, Di Bernardo took to social media Oct. 29 and pleaded for a live donor with Type O blood to come forward.
“We’re seeing more and more of these types of public appeals, and it is an indication of people’s desperation” said Melanie Kearns, a spokesperson for the Canadian Liver Foundation.
The plus side of such campaigns, Kearns said, is the attention they draw to organ donation, including becoming a live donor.
After The Free Press published Di Bernardo’s story, dozens of people reached out to find out more information about being potential donors. The London Health Sciences Centre is in the process of working through that list of people, said Di Bernardo, adding she doesn’t know how many people are on the list or whether any have been tested yet.
“They don’t really share that info with me,” she said.
A hospital spokesperson said by e-mail it can’t speak specifically about Di Bernardo’s case because of privacy concerns.
With her chances of finding a compatible donor through friends and family exhausted, Di Bernardo is putting her hope on a stranger.
“I still feel hopeful that there’s a donor somewhere on that list.”
LIVE LIVER DONORS
- Ideally, between ages 18 and 55
- Must be in good health, take physical and psychological testing
- A portion of the liver is donated
- The donor’s organ grows back in a few months
- Recovery takes six to 10 days in hospital
- Risks include infection and, in rare cases, even death
- Information: London Health Sciences Centre, http://bit.ly/1Wsmm7N