“I'm A Living Liver Donor—And I’d Do It Again If I Could”
(Illustration: iStock)
I had never really thought of organ donation before, aside from signing the donation card that came with my license. And then, a pamphlet came in the mail in December 2022. It was from an organization that pairs people who need kidneys with people who will donate kidneys. I said to my husband, I'm really intrigued by this. So I reached out.
A few weeks later, a woman from the organization came to my house and did a cheek swab. And she gave me more information about kidney donation [which typically involves a major surgery that requires at least six weeks of recovery time]. I told her that I was hesitant about it. She said that I didn’t have to make a decision right then and there, but she’d contact me in about six weeks to let me know if there was a match. And it wound up that they did match me with someone.
From there, I did nine months of testing. I kept passing each test, and getting more excited. One of the last steps is meeting with a social worker and a transplant surgeon. The surgeon said that unless they found something out of the ordinary on my CT scan, they could go ahead with the donation.
I was at a point in my life where my kids were both in university and I was just like, What's next for me? What else can I do? The more I got into the process, the more I felt like I was just meant to do it.
And then a week after the CT scan, I got a call from the transplant team. They said, I'm really sorry. You've been disqualified. There was a variation in my right kidney. So they couldn't take my left kidney and leave me with the right one just in case.
I was really upset. I called them back a week later and asked whether there was any way they could dissect out what they were concerned about in my right kidney, and then give it to the recipient? And they said they had thought about that, but no.
It took me a while to let it go. I think it's because they only test one person at a time [for]]. So I gave the potential recipient such hope, and then after nine months, they were let down.
Then in September 2024, I read an article in the National Post about a man who was Canada’s first living liver donor. The article was so inspiring, and the process sounded attainable. Right when I finished reading it, I said to my husband, “There's a link to a form to become a living liver donor—I’m going to fill it out and send it in.” He was very encouraging—he knew how much doing something like this meant to me.
Three weeks later, my phone rang. It was one of the transplant nurses from Toronto General Hospital. It was really exciting to hear from them. They explained how living liver donation worked. [Adult recipients require between 60 and 70 percent of a donor’s liver; the donor’s remaining organ will regenerate to its full size within a few months.] Then they asked me if I was interested, and I said yes.
From there, they set me up with two appointments with two different transplant surgeons who took me through the entire process: the workup, the surgery, the post-op, the recovery. They really didn't leave any details out. I work in healthcare, and I know what informed consent is and what it includes. And they included everything, all the risks to the surgery.
They also asked me: “Why do you even want to do this? There's no benefit to you.” It was a really interesting question—I mean, how do you reply to that? I said, “Why wouldn't I want to help someone who is not healthy live their life? I'm able to do whatever I want because I'm healthy, and there's someone out there that isn't. Why wouldn't I give that opportunity to someone else?”
I completed the testing, including an MRI, over two days. In late fall 2024, I was given a surgery date for early 2025. I was matched with a baby.
I didn’t tell a lot of people what I was doing aside from my husband and kids until a week before the surgery. When I was going through the process for kidney donation, I had told a lot of people and then I was really let down.
Because I was donating to a baby, they only needed to take about 25 percent of my liver. And the cool thing is, if my donated liver was too big, it would shrink to fit the baby—and then it would grow from there. And once the baby received the liver, they would start reaching milestones again within a month.
The surgery was a joyous day for me. I wasn’t scared at all. But I can't imagine the eggshells that the parents felt waiting to hear if the donor was going to be accepted, and to have their baby in surgery and then recovery afterwards. So just that waiting period for them must have been awful.
The surgery took around seven hours. When I woke up, the first think I asked was whether they were able to take my liver. I was so excited when they said yes. At this point, I felt a small amount of pain—nothing major. The day after the surgery, the surgeon came in and said that my liver was donated to a baby who had a genetic disorder. His parents weren't matches. And his surgery went really well. My husband and I just started bawling. We still cry about it—tears of joy, like, we can't believe we did this. And I say “we,” because I could not have done this without my husband or my kids. They were with me every step of the way.
I was released from the hospital six days later. I took a full month off from work, and then I tried to go back full-time but I was completely exhausted. So I did half days for another month. But my recovery was uneventful; I had some discomfort, never any pain. I had to give myself a blood thinner shot every day for a month. And I took a medication for stomach acid, as well as some vitamins. Three months after the surgery, I started exercising again. And now I feel fully myself. The only physical reminder of the surgery is a five-inch vertical scar on my stomach. I wear it as a badge of honour.
When I was disqualified from kidney donation, I wasn't looking for something else. But then I read the article on living liver donation, and I thought, Maybe this is what I'm supposed to do. Because if I had given a kidney, maybe I wouldn't have been available to donate my liver to this baby. And he is always in my heart.
I celebrated my 51st birthday in July; the baby would have turned one around the same time—so we celebrated his birthday, too.
Donating my liver is one of the most joyous things I've done in my life. If I could do it again, I would. —as told to Maureen Halushak
On September 7, Helene will be participating in the 26th annual Constantine Yorkville Run, which supports more than 35 charities in Toronto, including the University Health Network's Centre for Living Organ Donation. Want to join her? Register here.
