Written by Saad Ahmed
“It was a few weeks out of my life in terms of recovery, but you give someone their whole life.”
Heather Badenoch is a non-directed organ donor who donated 22 percent of her liver to a stranger in 2018. Non-directed organ donation is a completely anonymous process, as there are no connections between the donor and transplant recipient. Heather is 1 of approximately 70 non-directed living donors since the program began in Canada 15 years ago. I had the opportunity to speak with Heather about her organ donation journey, what an anonymous donation entails, and some of the organ advocacy work she partakes in.
“I started the process when I saw a news story of a little girl, Gianna, who needed a portion of a liver. I originally signed up and applied to give to her. Months later, I received the good news that she had received a liver from someone else. I asked to stay in the process and become non-directed, leaving it up to the transplant team to choose the person that needed it the most. I ended up receiving a call that I was a match, and ultimately donated in 2018. It is, without a doubt, the best thing I’ve ever done.”
Heather was also exposed to living organ donation by one of her neighbours, who had recently received a kidney from his nephew. She read public organ donation appeals in the media, and saw stories of successful donations. She explained that, over time, seeing these stories primed her to become an eventual donor. By the time she saw Gianna’s story, she was ready to go.
“My husband jokes that I applied before I actually talked to him about it.”
Heather was only the 55th person to donate a portion of her liver non-directed at Toronto General Hospital. In the year she gave, there were just four non-directed liver donors. Heather’s journey began when she applied to donate in 2016. She went through a lengthy screening process, and learned in the same year that she was accepted.
“I was in a meeting at Ottawa City Hall when my phone rang, and I stepped out of the room to take the call. I was told that I’d been accepted as a donor, and I was overcome with emotion. I cried my eyes out in the hallway. It was an honour to know that I was going to be a part of saving someone’s life.”
However, being matched with a suitable recipient took a while, as Heather is a tall woman who was hoping to give to a child – anatomy size and spacing are important considerations in the matching process.
Heather described that she felt more excitement than fear throughout the entire process. The Living Donor Coordinator, as well as four transplant surgeons at the hospital, briefed her about possible risks and complications related to the procedure. Thirty per cent of donors have some sort of short-term complication including pain, nausea, infection, bile-duct leaks, hernias, etc. Despite this, Heather explained that she didn’t have any anxieties or worries about the surgery until the night before.
“You’re in the hotel the night before, and it really hits you what exactly you’re doing. Though, it helped that this wasn’t my first major surgery. Back in 2001, I had five lung collapses and two lung surgeries. I had a great recovery from those and responded really well to pain medication, so going through that experience definitely made me a little less worried about the upcoming liver donor surgery.”
When asked about her favourite part about the process, Heather described an anecdote from the morning after the surgery. Dr. David Grant, the surgeon who completed the recipient’s procedure, came to Heather’s room and told her that the recipient was doing well. Because the donor and recipient are anonymous from each other, this is the only update that Heather ever received from the transplant team. Although she was drowsy, Heather explained that she remembered this moment vividly, as it was the best news she had ever gotten.
Toronto General Hospital offers newly registered non-directed donors with the option to be paired up with experienced donors in a mentorship program. At the time of our conversation, Heather was in touch with two prospective liver donors, who were matched with her by the hospital. Through this peer-to-peer mentorship, she answers their questions regarding the screening process, the hospital stay, pain control, recovery, possible complications, and offers general support throughout the process.
“One woman I was mentoring was increasingly nervous the closer she got to surgery, which is completely normal. The morning of the surgery, you get up very early to get to the hospital. So, I got up as early as she did, and we messaged while she was making her way to the hospital to help her feel supported and comfortable.”
Today, Heather is active in donor-related volunteering and advocacy. She volunteers with the UHN Centre for Living Organ Donation Advisory Council, the Canadian Donation and Transplant Research Program, and the Canadian Liver Foundation. In these roles, she participates in calls about a range of issues, including opt-out legislation, health equity issues, and promoting living donation.
“Just yesterday, I attended a webinar about Saskatchewan First Nations and Metis Organ Donations. It was incredibly informative to learn how different cultures experience transplant in different ways.”
Acutely aware of the shortage of organs in Ontario to meet the needs of everyone on the transplant list, Heather volunteers to run public appeals to help people find living donors. Many people on hospital transplant lists are unaware about where to start looking or who to contact.
“Since I’m a communication strategist and do social media and media relations for a living, I’m very comfortable with all this stuff. Someone out there is on the transplant list who’s struggling with how to create a Facebook page or call a newsroom, and it’s a piece of cake for me to help out with this. I help edit people’s emails they send out to ask for a donor, or help them create a Facebook or Twitter presence. So, this kind of work is the quieter stuff I do behind the scenes that I find really, really meaningful.”
So far, she has supported nine public appeals for living donors. Seven of those have found donors and the remaining two are making great progress.
Overall, Heather is content knowing that her liver donation could have gone to anybody. She explains, “It’s an equitable process. Non-directed donors don’t get to specify a preference for a recipient’s religion, culture, sexuality, etc. – and this truly aligns with my values. My friends come from everywhere, have different gender identities, sexual orientations, etc. So, for me, it was a really beautiful thing and a truly ‘Canadian’ act.”
When asked what she’d say to any readers that are skeptical or hesitant towards organ donation, Heather replied, “Being a living organ donor is the single best thing I’ve ever done. I would do it again if I could. In fact, I have a family member that could need a kidney, so we joke that it’s reserved for her. But if I get the chance to do it again I absolutely would. It’s the single best thing I’ve ever done in my life.”