Sandra Holdsworth remembered being awake at two o’clock in the morning she began writing letters to her husband and children while lying in her hospital bed.
She was 28 years old when she found out she was ill with an incurable disease.
“I’d gone a long time trying to figure out what was wrong with me,” she said. “So it was sort of more not as a relief, but then figuring out well I at least now know what’s wrong with me and how to deal with it.”
Holdsworth was diagnosed with primary sclerosing cholangitis (PSC), a chronic liver disease caused by progressive inflammation and scarring of the bile ducts of the liver. It’s very rare.
“There is no treatment,” she said. “They’re working on medications, but basically you need a liver transplant.”
When she was 30 Holdsworth was told that she had to visit the transplant co-ordinator. As the time went by, however she realized she was sick and had to get the transplant.
“You basically know that without a transplant you can die,” she said. “So you start to get to the acceptance of it.”
In Canada there are more than 4,000 Canadians waiting for organ donations to save their lives. In 2011 there were about 1,803 transplants performed, but about 195 patients died waiting for a suitable donor to be found.
Julie Cissell is a transplant assessment co-ordinator at the Toronto General Hospital. Her original plans involved becoming a gym teacher or helping animals.
“Then something swayed my mind in my teen years so I took a year off and worked,” she said. She added that donors were always expected to be family members, but now others can help with the donation.
“Now we commonly have people who come forward who are a colleague or a friend. we also have anonymous donors that come forward to potentially give a kidney in our program,” she said.
Sometimes an evaluation may determine that a person has a disease and cannot donate.
“Under rare circumstances with our testing we have found even cancers in individuals,” Cissell said. “Which is a sad thing because they can no longer donate.”
Tina Bedard remembers the long days and nights at the hospital, doing tests to see if she could donate part of her liver to her sickly uncle.
“It was very lengthy and tiring. It consisted of a lot of tests to make sure that you were a match,” she said, “because the liver is a very cardiovascular organ with a lot of blood cells and veins.”
Bedard’s uncle hoped the donor might be someone donating out of kindness.
“His thoughts were from the very beginning… he didn’t want to feel obligated to owe anybody anything,” Dedard said. “I agreed and that’s why I was so forthcoming.”
Bedard’s uncle and Sandra Holdsworth are still alive and well today.
Holdsworth has become an advocate for organ donation.
“If someone wants to donate they should register on the new online register on at beadonor.ca,” she said, “because we don’t know what can happen to us.”