By Dale Woodard
Family members of transplant recipients stepped forward to speak on the current crisis for transplant patients and those awaiting transplant in Alberta as well as the importance of getting vaccinated during an online session in October. The Alberta Transplant Institute and The Kidney Foundation hosted an online panel discussion entitled “Life and death with three doses: the current situation in Alberta for transplant recipients”.
On hand as part of a host of guests was Lethbridge’s Toby Boulet, the father of Logan Boulet, who was among the 16 people killed in the Humboldt Broncos bus crash in April of 2018.
Logan’s decision to become an organ donor inspired hundreds of thousands of Canadians to do the same, creating the Logan Boulet Effect.
Boulet was joined by Kerri Paine, the mother of a 16-year-old heart recipient from Edmonton, Tisa Perra, a liver recipient from Calgary, Lindsey Kemp, mother to a five-year-old two-time heart recipient from Edmonton and Dave Mathers a Calgary resident who had his kidney transplant cancelled at the last minute and remains waiting for his kidney.
They were joined by Dr. Justin Weinkauf and Dr. Kieran Halloran, both of the University of Alberta in Edmonton and Karen Doucette, a transplant infectious disease physician in Edmonton.
At the session, the families discussed how they were impacted by the current high rates of COVID in the community in Alberta and Saskatchewan or by the overloaded health care system.
Mathers was scheduled to have his kidney transplant Sept. 8.
“I was already in the hospital. My donor, who is anonymous, was in the hospital at the same time. They were doing all the pre-work the evening before to get us ready for the operation the next morning,” said Mathers. “Then my surgeon walked in and let me know that, through no fault of my own or my donors that they were going to have to cancel the surgery. I had to make the hardest text of my life and send it to my wife and daughter to tell them that, believe it or not, it’s over and they have to come pick me up. Now I wait.”
Mathers said he would argue Alberta was the only place he could live there something like this could happen.
“It’s a shame, it’s an embarrassment. How do I feel? We can all imagine what it was like if the rug was pulled out from under you. I still have to stay optimistic and hopefully we can start to resume surgeries pretty quick. I have to have the kidney, but my worry is I have an anonymous donor and they have a life. Whoever it is has been incredible, but at some point, it won’t work for them. At some point someone in their family will get sick, or they’ll get sick or their work situation might not permit. Something could happen and I’ll lose my donor. We’ve been testing for over a year now and we’re all fully tested. You just want it to happen.”
Perra has been a liver transplant recipient for 11 years.
“Prior to COVID-19 I had a full life. I travelled to 27 countries and I competed in the National and World Transplant games. I played the flute in a community band,” she said. “But now, since COVID has been around I’ve had to basically stop all the activities I enjoy and self-isolate at home despite having three vaccine doses. It’s hard because I’m seeing everyone go back to their normal lives and I’m still at home and not able to go out and see my family or friends. I’m not able to go work in the office and it’s even harder because I’m really pro-vaccination. I feel like that’s the only way we’re going to get out of this, if we have strong immunization in the community.
For now, Perra says she’s basically under house arrest.
“I can’t see anybody or do anything and it’s really anxiety-provoking, that the hospitals are full and should something happen to me, whether it’s simply not related to COVID or I get a COVID infection, I’m not confident I’m going to get any health care at all.”
Kemp echoed Perra’s feeling of being trapped.
Her son has received two transplants and with his second heart he received two weeks before COVID.
“There is always the risk of benefit analysis we have to make every time we do an activity as a family,” said Kemp. “We’re constantly watching the numbers and when it’s safe to do something and what part of Alberta we’re in and if we feel safe enough to go out and do those activities. It’s frustrating and exhausting.”
“Through his illness and now with COVID he has not been able to do what other kids do. We haven’t been able to put him into extracurricular activities.”
Paine spoke of the challenge she faces with her 16-year-old son as well as her 18-year-old daughter. Last year her son moved to online learning in Grade 10 and is still at home today, said Paine, adding prior to COVID he had qualified for the Alberta Bowling Competitive traveling bowling team, but hasn’t set foot in a bowling alley since March of 2020.
“COVID has exposed how much more stressful living with or being an immunosuppressed individual is. I can only ask that this is bigger than one person and that everybody has to take care of each other and for those who can’t build up antibodies, it’s up to everybody else to step up and help. So, if you can, please get vaccinated.”
Boulet agreed that it wasn’t about just one person.
“It’s not about Logan, it’s not about me, it’s not about any of us individually. It’s about our community and that means Alberta and also Saskatchewan,” he said. “People in our community aren’t thinking about the team. They’re thinking about themselves. They’re vaccine-hesitant and that’s caused massive difficulties within our health care systems. It’s postponing organ transplants like Dave’s and it’s putting other people like Lindsey, Tisa and Kerri in difficult decision-making spots with their lives.”
Boulet said all they can do right now is simply speak out.
“Logan has done his bit and we speak out to anybody who wants to ask and people have called and media outlets have called us and we do interviews and we never say no. We speak out and we speak against the decisions that have been made by the governments and we speak out in favour of families who have spoken today and we support the best we possibly can. We’re not scared to say to anybody what we think needs to happen and what has happened is a tragedy.”
The discussion ended by speaking of the importance of reaching out to the health minister, premier, chief medical officer of health or the MLA, four main targets.
“Everyone in this group today has a story to share and you have to go to the media and not be scared to share your story with the media,” said Boulet. “Don’t let the MLA’s off the hook. Don’t accept their talking points or their position they’ve been told to say. Push and push and push and you’ll get what you want. That’s how you get media attention, by being someone who steps forward outside and says ‘This is wrong. I have a story to tell. You want to hear my story.’ You can’t be scared. “The worst thing we can do is shut down our computers and hope the person beside us does something. You need to do something.”
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