Organ donations can transform lives, but being aware of the risks — like cytomegalovirus (CMV) — and advancing transplantation research are crucial for success.
National Organ and Tissue Donation Awareness Week, taking place annually during the last full week of April, raises awareness about the critical need for more donors across the country and encourages Canadians to register their decision and to talk to their loved ones about organ donation. Over 4,300 people in Canada are currently waiting for a lifesaving organ transplant.[1] In 2022, 701 Canadians were removed from organ transplant waitlists — 39 per cent of whom had died while waiting.[2] And while 90 per cent of Canadians approve of organ and tissue donation, only 32 per cent have actually put their names on an organ donation registry.[3] There’s much room for improvement.
Driving better outcomes
Patients in need of an organ transplant face myriad issues, including challenges in living donor processes, long waitlists, lack of peer support from other patients, and poor understanding of post-transplant risks.
These challenges led Susan McKenzie, who had a kidney transplant in her early forties, to establish the Kidney Patient and Donor Alliance of Canada, a grassroots, volunteer-led organization that connects patients and donors in the kidney transplant space.
“There were so many things that I didn’t know when I was going through my kidney transplant journey and that I really wish I’d had someone to talk to about,” says McKenzie, who’s now President of the Kidney Alliance. “Had I been more informed and educated, had I advocated more for myself, my outcome could have been better.”
Educating patients
McKenzie is focused on health care reform to prioritize transplants (which save lives and present huge savings for the health care system) over dialysis, as well as patient education on post-transplant considerations like immunosuppressant medications and risks such as cytomegalovirus (CMV) infection. While CMV — which is related to the viruses that cause chickenpox, herpes simplex, and mononucleosis — is incredibly common and rarely causes serious medical issues, it can however be a different story for transplant patients.
“My living kidney donor was positive for CMV,” says Alexandra Freund, Provincial Coordinator of the Transplant Ambassador Program, a volunteer-run peer support program which was also started by McKenzie (Freund’s mother). “I wish I’d had more knowledge around what that meant for me.”
Fortunately, preventative medication helped Freund to avoid any CMV complications and she’s gone on to live a healthy life and to have two children in the seven years since her transplant.
“Being informed is so important,” she says. “If patients are aware of things like CMV, they can ask the right questions about medication and seek support.”
Harnessing the power of research
Research in organ transplantation is incredibly important for driving better patient outcomes and quality of life. Understanding organ transplantation complexities and challenges like lifelong medications, mental health issues, and health risks faced by transplant recipients is critical.
“It’s not easy being a transplant recipient,” says Patricia Gongal, Executive Director of the Canadian Donation and Transplantation Research Program, a national research network with over 200 members working collaboratively to advance knowledge in donation and transplantation research. From the need for lifelong anti-rejection medication to mental health concerns to physical health challenges and medication side effects, transplant recipients have much to contend with. “We have a lot of work to do to understand how to make things better,” says Gongal. “And that’s why research is important.”
If you or someone you know will be receiving a transplant, speak with your doctor and make yourself aware of the risks of CMV.
This article was sponsored by Takeda.
References
[1] https://www.canada.ca/en/health-canada/services/healthy-living/blood-organ-tissue-donation/organ-tissue/transplantation-collaborative.html
[2] https://www.cihi.ca/en/summary-statistics-on-organ-transplants-wait-lists-and-donors
[3] https://organtissuedonation.ca/en/about
