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 30% 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 less than 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 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 non-directed at Toronto General Hospital. In the year she gave, there were just four non-directed 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. However, being matched with a suitable recipient took quite a while.
“I was in a meeting at Ottawa City Hall, and I stepped out of the room to take the call. I was told that they found a match, 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.”
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. 30% 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 5 lung collapses and 2 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.”
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 procedure, came to Heather’s room and told her that the recipient was doing well. This is the only update that Heather ever received about the recipient. 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. Heather is currently in touch with 2 new donors, who were matched with her based on various traits. Through this relationship, she answers a multitude of queries regarding the screening process, the hospital stay, pain control, recovery, possible complications, and various other questions and thoughts about the process.
“One woman I was mentoring was especially nervous regarding the process, 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 got up, and messaged her while she was making her way to the hospital to make her feel supported and comfortable.”
Today, Heather is active in donor-related volunteering and advocacy. She volunteers with the Canadian Donation and Transplant Research Program (CDTRP), the Canadian Liver Foundation, and with the “Creating a Culture of Donation” organization. In these roles, she aids with research surrounding opt-out legislation, and works with professionals to target health equity issues.
“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.”
Heather is also on the advisory committee with Toronto General Hospital, and volunteers to help people on the transplant list find living donors. Most people on the hospital transplant list are unaware about where to start looking or who to contact. Heather provides much-needed support in helping them get started.
“Since I’m a communication strategist and do media relations for a living, I’m very comfortable with all this stuff. Someone out there is on the transplant list who’s struggling on 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.”
Overall, Heather is content knowing that her organ 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.”