A Montrose, P.E.I. couple has their luggage and a portable cot packed in the trunk of their car for when they get summoned to Halifax.
Kevin Clements, 52, has been near the top of the list for a liver transplant since March. If he gets a call that a donor liver is available he has to be in Halifax within four hours. There’s no time to pack at that time, stresses his wife, Josephine.
Clements, on sick leave from his job as a school cleaner, had endured nearly four years of end-stage liver disease before getting on the transplant list. During that time his liver has gone from normal size, about as big as a football, to golf-ball-sized. A biopsy finally determined he was suffering from fatty liver disease.
The disease has progressed to the point that a transplant is urgently needed. While there is a possibility of receiving part of a liver from a living donor, the Clementses have been told there is a better likelihood of a donor kidney coming from a deceased person – someone who has signed an organ donation consent form and is being kept on life support until organs can be removed for transplant.
The Clementses are anxious for Islanders who might be agreeable to having their organs removed for transplant following their untimely deaths to know the importance of signing up with the electronic P.E.I. Organ and Tissue Donor Registry.
Since the registry was established in 2015 more than 32,000 Islanders have done so, but Josephine Clements thinks the number of people who would agree to be donors is even greater than that.
Angela Carpenter, manager of Health P.E.I.’s Organ and Tissue Donation and Transplant program, doesn’t disagree.
“If you have a sticker on your old health card, and that’s your only method of telling people you want to be a donor, I have no way of knowing,” Carpenter acknowledged. “The sticker came with your health card and you put it on yourself. It was kind of up to you to keep track of that.”
“Almost everybody we talked to this weekend said, ‘oh, yeah, it’s on my license; I signed up when I got my driver’s license,’” Josephine said of the comments that flowed from a social media post about her concerns last week. Her concern is that some people will inadvertently cease to be donors when their health card or license is renewed if they neglect to sign up to be on the electronic registry.
Maureen Chaisson highlighted the Clements’ concerns on social media last week, then signed up to be on the electronic registry. “It was very, very user-friendly, very quick,” she described the process. Within 24 hours of sharing the steps online she heard from 10 friends who also signed up.
“I think it’s great; I think it makes total sense to do it that way,” Chaisson commented. She was just wanting to do her part to make sure people don’t miss out on being registered.
Chaisson, who is facilitator for a Stepping Stones to Success Program, subsequently discussed the awareness piece with her program participants. They’ve started circulating a flyer telling people how to sign up.
Besides doing it online, Carpenter said sign-up forms are available at all Access P.E.I. locations. There was also a mail-out to 60,000 addresses in October 2015. The returned forms were the start of the registry. By February 29, 2016, there were 6,109 people on the registry and, as the paper forms were being entered, the number tripled by August of that year and surpassed 32,000 last month.
“We do get forms from Access P.E.I. sites and they are always asking me to replenish the sites, so it is happening,” Carpenter describes the uptake.