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Sarah Middleton, Non-Directed Living Liver Donor

Sarah Middleton

Any donor will tell you that living organ donation has risks. Some are common, and others are completely unexpected. In 2014, a couple from Kingston went public with their family's story. Their adopted twin daughters, Binh and Phuoc, were in need of liver transplants due to Alagille Syndrome, a rare genetic disorder. The father was a match but could only donate to one of the girls. They were searching for another donor.

Like the rest of the world, Sarah Middleton was captivated by the family's story. It didn't take long for her to fall down a rabbit hole of living liver donation. "Their story was so compelling, I just felt for them so much. I'm also very medically curious, so there was another part of me that was completely fascinated. How could a live person donate their liver, and how could a father donate to his adopted daughter? I had to look into it."

Once she realized it was possible, Sarah couldn't get living liver donation out of her head. "Knowing that someone could live if someone else chose to be a donor, and knowing that I could potentially donate – once I had that information, I just couldn't let it go until I decided if it was or wasn't something I was going to pursue."

Sarah told her husband that she was considering it. "I told him right away because I needed him on board. He wasn't sure what to think at first. He understood it could help someone but he didn't love the idea. We both recognized that we needed to get more information."

Sarah took the process step by step. She decided to fill out the form and then see if anything came of it. "If it was meant to be, it was meant to be," she shrugs. "I just took it one step at a time. I never said 'I'll do it' – I said, 'I'll fill out the form, I'll go have a blood test, I'll have a chest X-ray.' Everything that was presented to me, I asked, 'is that something I can do?' and I would go from there."

As the process went along, Sarah's husband became more and more comfortable with the idea of his wife donating. "When we went to the first surgical consultation with Dr. McGillvary, my husband asked a ton of questions. When we were finished, his confidence in the level of care was very high."

Surgery went smoothly, but Sarah's recovery was difficult. "It's different for everyone, and for me it was rough. It sucked. I was in pain. I felt like a ragdoll. But the nurses were really good. So was the surgical follow up. And my husband was great. He was really into his caregiver role. He's a very hands-on kind of guy so he was kind of like the nurses' assistant."

Within six weeks, Sarah was back at work. At eight weeks, she felt completely like herself again. 16 weeks after surgery, the unexpected happened. A friend of Sarah's was talking with the mother of a liver transplant recipient in a London waiting room. Through the conversation her friend realized that this was the family who had received Sarah's life-saving gift.

"It's a weird coincidence," admits Sarah. "We weren't trying to find each other, and we've never met, we've never spoken, only texted a few times. She thanked me for saving her son's life, and that meant a lot, but that's not why I did it. I signed up to do it anonymously. It's like donating blood. I don't need to know who gets my blood. It's just a good thing to do."

While Sarah's circumstance is not unique, it is incredibly rare. With no protocol to turn to, she was unsure how to navigate the situation. "It threw me a bit. There's definitely a reason that UHN has strict policies about anonymity. Going in, I knew my role in the situation, it was clear. That stability shifted a little when the anonymity was removed. But it happened – and at the end of the day, if that piece of the story makes it more compelling to other people that could be could be thinking about donation, then that's great."

Ultimately, Sarah and her recipient's family have chosen to respect each other's privacy. Their contact is limited.

Since donation, Sarah's life has resumed as normal, with the addition of a few new friends, her fellow living liver donors – or the "Chopped Liver Club," as they jokingly refer to each other.

"I think some people think that donation – anonymous donation especially – sets you apart from all other humans and it really doesn't. For me, when there's an opportunity to help, to save someone's life, I have to consider whether I can do it or not. Many people can't be living donors, for whatever reason, but I could. And it's not like I didn't get anything from it, I did. Knowing that I helped gave me something, and that's really all I need."


 

Len Hodder, Non-Directed Living Liver Donor

Len Hodder

In December 2018, Len Hodder and his wife Margaret sat down to watch a holiday movie. "It was one of those feel good, Hallmark movies," remembers Len. "Once Upon a Christmas Miracle. The gist of it is a woman falls ill, a man steps up and donates part of his liver to her, and they live happily ever after."

"It's based on a true story," Margaret explains. "They're from Chicago."

That you could donate a part of your liver while still alive was news to Len and he was intrigued. "I always have my iPad on my lap. So we're watching the movie and I'm also doing some research. When the movie was over I turned to Margaret and said, 'I could do that, I could be a living liver donor.' And I don't remember exactly what she said back, but I know it wasn't entirely positive," he laughs.

In the lull between Christmas and New Years, Len continued to ponder the idea of living donation. He filled out the Health History Form from the UHN Transplant website, but waited until he got the okay from Margaret before submitting it.

While they waited to hear back, Len and Margaret attended the Centre for Living Organ Donation's "Pathways to Transplantation" seminar, where they heard Sonya and Jaime Munoz's story. "That was a good way to get started because you got to hear about someone's personal experience first-hand."

"Eventually I got a phone call from the living liver donor coordinator. We had a phone interview, and that seemed to go okay so we scheduled my appointments. In total, it was about six days of testing. I guess for some people it's only three days, but I needed some follow up tests."

Donor safety is a top priority for Toronto General and it shows; our living donor survival rate is 100%. All living donors undergo rigorous testing to ensure the best outcome. Through the testing process, it was revealed that Len had a small hole in his heart and that the bilirubin in his liver was high, indicating a potential issue. But after further testing of his heart and a liver biopsy, Len was given the go-ahead. The surgery was scheduled for summer 2019.

"Everytime he passed a test he got excited," says Margaret. "And I said, 'you're in such good health, you really shouldn't be surprised. We eat well, we exercise." After her initial skepticism, Margaret had completely come around the idea of Len's donation. "A big part of going forward eagerly was meeting the staff. Where are you going to find a better group? I felt very supported and I knew Len was in good hands."

As his surgery date approached Len prepared himself for his first major surgery. "It was kind of bizarre actually. People usually say they get more and more nervous as it comes closer, but for me it was the opposite. I got more and more calm. When I was in the operating room, I was cracking jokes with the anesthesiologist."

Len's surgery was without complications and his recovery was smooth. "It couldn't have gone better. On day two, I was out in the halls, walking around, I didn't even need the walker. On day three I was eating solid foods, and on day five I went home."

"I didn't have any sleep issues, any digestive issues, within three weeks I was able to do my regular 4km walk. One month after surgery, we went for a steak dinner to celebrate."

"But the highlight was definitely on day two, when my recipient's surgeon – Dr. Sayed – stopped by and gave me an update. Apparently the surgery went extremely well and the recipient was doing really, really well. And that changed everything. I just couldn't stop smiling."

At his November follow up, Len found out that he still had his gallbladder – typically removed during the surgery – which accounted for the lack of digestive issues, a common discomfort during recovery. He was also told that his recipient was at home and recovering well.

"The few people that I told, each one of them asked 'isn't that really dangerous?' And yeah, it's not without risks. But if you compare the risks to the donor and the benefits to the recipient – it's just a non-starter, for me anyway. It's life-changing, life-saving. It just felt obvious that it was the right thing to do. And I'm so happy I made that choice. Hearing that my recipient is doing well – it's just the best. If the liver could grow back to its original state, I would do it again in a heartbeat. I truly would."

Since donating, Len has slowly been drafting a letter to his recipient. "I keep editing it. I want to send it soon. It'd be kind of cool to hear back. I'd love to learn more about them and how they're doing – you can't help the curiosity. But I totally understand the need for anonymity. I didn't do this for the glory. I know some people who want to make something really big out of being a living donor. That's not for me. It's a very personal thing. I wanted to help someone."

Update: Len sent his letter and received a response that "made his day" a few weeks later.


 

Devin Jones, Non-Directed Living Liver Donor

Devin Jones

In 2016 Devin Jones's three-year-old niece was diagnosed with hepatoblastoma – a rare liver cancer found only in infants and children. The doctors told the family that she would need a transplant and that a living donor was their best option. Her father, Devin's brother-in-law, wasn't a match; her mother was pregnant, and therefore unable to donate.

Like his niece, Devin's blood type is O-, the universal donor that can only receive from O. He began the work up and was confirmed as a match. Their surgeries were scheduled for January 2017.

But due to complications, the family was told that the hospital couldn't go through with the surgery and it was cancelled. In June 2017, Devin's niece passed away.

"That's how I found out about living liver donation, and that I was an eligible donor," Devin remembers. "And I didn't really think about it again until the following year."

Hesitantly, Devin considered the prospect of anonymous donation. There were now two children in Devin's family who had died of liver disease – his niece, and his wife's brother who, also at age three, had died from biliary atresia.

"It was the 'what ifs' that made me hesitate. My wife has a big family, ten nieces and nephews on that side, we have a daughter, and I kept thinking, 'what if one of those kids get sick and they need a donor. Should I hang on to this liver in case someone else in my family needs it?'"

"I had to get over that fear – not just to donate but in general. And even if something did happen to someone in our family, maybe I wouldn't be an eligible donor at that time for whatever reason. I thought, 'This is something I can do now,' and I knew I'd kick myself years down the road if I never did it because of the 'what ifs.'"

After what they had been through, Devin's family was supportive of his decision, as was his new employer. In preparation for his donation to his niece, Devin had been saving his vacation and sick days for his recovery. Since deciding to become an anonymous donor, Devin had changed jobs. In his new position with the Saskatchewan provincial government, Devin discovered the mandatory medical donor paid leave of absence. Thanks to the paid leave and the Living Organ Donor Expense Reimbursement Program (LODERP) provided by the Kidney Foundation of Canada, Devin's choice to donate had no financial impact on his life. He was also provided with job security throughout the process. While Ontario has the Program for Reimbursing Expenses for Living Organ Donors (PRELOD) – provided through Trillium Gift of Life Network – Saskatchewan and Manitoba are the only provinces with a medical donor leave of absence, something we hope to change in the coming years.

The surgery removed approximately 25% of Devin's liver – the standard amount for a child in need. "The whole experience was bittersweet – for me and my family. We all wish it could've been my niece. That was hard on my brother and sister-in-law especially. They've been in the same boat as the parents of my recipient. They know the pain that those parents were going through. But then, those parents got the relief that my brother and sister-in-law never got."

Devin considered himself fully recovered when he could pick up his four year old again. In total, he was off from work for two months. "I was amazed at how easy it was. Maybe because I was expecting the worst, lots of pain and stuff like that, but it was okay. I watched Netflix. I read lots of books. The weather was great so I would read on the patio for hours. I reread the entire Harry Potter series, some westerns – recovery was pretty easy," he laughs.

Anonymous donors and recipients are permitted to exchange letters – the number of letters varies from province to province. "I haven't written to my recipient yet. I don't want them to think I'm chasing a thank you. I know they're grateful. I do hope they reach out to me at some point – I'd love to correspond with them, maybe even meet my recipient someday – but that's up to them. When I think about what my family went through, I was able to do something so another family didn't have to go through that. I didn't do it for a thank you, I did it to make a difference."


 

Heather Badenoch, Non-Directed Living Liver Donor

Heather Badenoch

Heather Badenoch's joy is infectious. You might have seen her smile beaming at you from the side of a Canadian Blood Services truck, on a poster in a TTC subway station, or on a banner outside of a Canadian Blood Services office anywhere in Canada. During the week, you can find her running Village PR, the agency she founded to support not-for-profit organizations.

In 2016, Heather applied to be living liver donor in response to a public plea made by the family of an eight-year-old girl who needed a liver transplant. Thankfully, she found a donor in her inner circle; she received a successful transplant from a school friend’s dad. Heather switched gears. Instead of directing her donation to that little girl, she would become a non-directed donor. When the time came, her liver would go to whichever child needed it the most.

"There are a few terms out there to describe this kind of donation. I like to say 'non-directed'," she explains. "'Anonymous' is very confusing for people, because I'm the furthest thing from anonymous. My face is on the side of trucks. And, 'altruistic' implies you didn't get anything in return. But in reality, saving a life is the best emotional high that hasn’t ended."

Like many non-directed donors, Heather's first steps towards living donation weren't conscious ones. Her and her family had discussed a past public appeal for a living donor at the dinner table, but it hadn't gone further than that. Then, the plea made by the little girl's family resonated with Heather, turning thoughts into action. Her husband, Paul, jokes that Heather filled out the living donor application before telling him.

"Paul was super supportive. Scared, but supportive. He understood. He has a big heart." Her husband was her main support throughout the screening process and while Heather was recovering from surgery. "You don’t do this alone," she says. "The donor gets the accolades, but they can't do it without a support system."

The screening process is rigorous, from medical tests to the psychosocial evaluation. "They make you memorize and be able to recite the possible complications – I still can." Yet despite the potential risks, Heather never questioned her decision.

"I've lost more sleep over meetings that went badly than the decision to be a living liver donor," she recalls. "I took a lot of comfort in knowing that Toronto General has performed more than 800 living liver donor transplants. And, all liver donors have fully recovered and returned to their regular lifestyle. They’ve never lost a living liver donor."

At Heather’s request, the transplant team paired her with Sarah, a previous non-directed living liver donor. Sarah became Heather’s donor mentor. "I never lacked for information. It was so helpful to have a mentor," says Heather. "There was nothing I didn't know ahead of time. And the transplant staff were incredibly accessible. I have to wonder what kind of hours Zubaida [Living Liver Donor Transplant Coordinator] works. She's very accessible to her donors. If you're in the process, she'll get back to you and answer every question."

The eight-hour surgery removed 22% of Heather's liver, a standard amount to give to a child. Donors who give to adults can donate up to 75% of the liver. Either way, the liver starts to regrow on day two, is at full function around day ten, and will return to full volume within two or three months.

Heather Badenoch in hospital

30% of donors will experience short-term complications after surgery. But not Heather. "I had a ridiculously good recovery. Whenever I describe my recovery, I try to describe others' as well for balance, because I was back at my desk part-time from home on day 11 and back to work full time in week 4. That's definitely not the norm."

Now, Heather is an active member of the living donor community and mentors prospective liver donors in the screening process. "I talk to donors all the time so they can meet someone who's done it. Before we connect, I always ask them to read the living donor manual on the UHN website. It's so well written and helps prospective donors understand the screening, surgery and recovery. Overall, the Transplant Program's website is really among the best out there. There's nothing comparable."

Heather will never meet her recipient. Not when her recipient becomes an adult, not even if both Heather and the recipient ask. Both the donor and the recipient of a non-directed transplant are asked to keep the surgery date confidential to prevent them from finding each other online or otherwise. It makes no difference to Heather. "You do it because you believe. And I believe in my heart that my little recipient is out there having a great life."


 

Trevor Hanagan, Non-Directed Living Kidney Donor

Trevor Hanagan

After training in the army, a stint in nursing school, and a few years of experience in corrections, Trevor Hanagan hesitantly gave health care another shot. Lucky for him – and many others – UHN was a perfect fit for Trevor; it’s been 15 years since his first day. What was even more unexpected than his career, was the way he found his lifelong connection to transplant.

"I’ve always thought kidneys are cool," he explains. "How they work, how they over-work, how you don’t need two. They’re super efficient organs. I think nephrology is just amazing."

When Trevor started his security position at Toronto General, he was assigned to patient watches in hemodialysis. "If there were dialysis patients with behavioral issues, I would sit with them during their treatment. For the whole 8 hours. Just sit there. I could remember seeing these patients come in and out, and thinking what a horrible way to live life."

Trevor was moved to a full-time position at Toronto Western Hospital where he met Aanka, a charge nurse in emergency. Their friendship was instantaneous. During their shared night shifts, Aanka revealed that her brother-in-law was on the waitlist for a kidney transplant.

Aanka’s family were uneasy about searching for a living donor. "She said they didn’t want anyone in the family doing it, they didn’t want to put pressure on people. She said they were putting faith in the deceased donation process."

Having seen firsthand what life with end stage kidney disease was like, Trevor reached out to the transplant team. Julie Cissell, the living kidney donation coordinator, helped him get the process started. "She asked if I had a recipient in mind and I said I did but I hadn’t approached them yet. She said that that was okay, that we could get things going."

Trevor began the assessment, excited at the prospect of helping Aanka’s family. But when it came time to approach Aanka’s brother-in-law, a donor kidney had already been found.

"Obviously it was great, but I was like, what do I do now? I had been committed to this process for a year and a half. And then one of the coordinators asked if I had heard about the paired exchange program. They talked me through it, I did some research on my own and I decided to go ahead with it."

Trevor Hanagan

The kidney exchange program matches incompatible pairs of donors and recipients with other incompatible pairs, to create kidney transplant matches. Those who donate, do so in exchange for the kidney compatible with their recipient. Those who receive, can only receive because their incompatible donor chose to give to someone else. Non-directed donors like Trevor start a domino effect, a chain of matches, with the last pair donating to someone on the waitlist.

"Sometimes the chains are massive. I think the largest one in Canada was 23 pairs. And you get someone off the list. As far as living kidney donation goes, it’s bang for your buck." His decision made, Trevor was once again filled with excitement at the prospect of helping people get off dialysis and return to their lives. Looking back, he acknowledges he might have missed a few things in his determination to donate.

"I was intoxicated by the whole process. You get excited, you get nervous. I didn’t pay enough attention to what my partner, Francesco, needed. I asked him why he didn’t say anything, and he said, 'what am I going to tell you, not to save a life?' It was hard for him. There were times he didn’t want me to do it, when he was resentful, when he was scared. And I just wasn’t aware of that."

"For me, I got to meet the surgeon, got to meet the team, I work here. I think Toronto General is the best hospital in the world. Our people are awesome. I have complete faith in them. This is what they do. For Francesco, he didn’t have that same connection."

Thanks to Trevor’s donation and Francesco’s endurance, five individuals received kidneys. Trevor’s recovery, while long, was without complications.

"It took me about 10 months. Some days I just couldn’t get out of bed, I had no energy. I was exhausted. And apparently I was a nightmare to take care of, according to Francesco," he laughs. "His mom still calls me 'principessa.' But in 10 months and two days – boom! I was back."

In 2018, Trevor was promoted to a management position. Trevor and Francesco spent the summer of 2019 on a road trip exploring Quebec and Atlantic Canada. "I have no regrets. I feel completely fine. I still enjoy some drinks every now and then. I still eat what I want to eat. It’s just like before."

"It’s not magic, it’s medicine. But it is miraculous. You can impact people through this gift. And I didn’t have to go to school for that, I didn’t have to study for that – well actually, Julie gave me a few tests – you have to know the risks. But you don’t have to be afraid. This is what these people do every day."


 

Kelly Bryan, Non-Directed Living Liver Donor


Kelly Bryan

Kelly Bryan has been a paramedic for 16 years. If you ask her what inspired her career choice, you’ll get a playful smile. "It sounds funny," she laughs. "But as a child I loved Rescue 911." Kelly was part of the first paired liver exchange in North America, an achievement she never intended to be a part of. "Living donation had never really occurred to me. I didn’t even know you could donate part of your liver," she remembers.

Like many non-directed donors, what first opened Kelly’s eyes to the possibility of living liver donation was a public plea on Facebook.

"It was from a single dad in Peterborough. I didn't have any mutual friends with this person or any connections, except that we were in the same location. I read his story and I thought, 'I’m pretty young and healthy, I wonder if I could do it?' The next morning I woke up thinking about him."

On paper Kelly was the perfect candidate. The father from Peterborough found a donor and Kelly decided to stay on the list. The phone call came quickly. She was scheduled to donate to a child but a second phone call asked if she would consider switching to an adult.

"They explained that they had a donor for the child, and if I donated to an adult, potentially two lives could be saved. I said yes right away, but they told me I couldn’t make the decision overnight, that it was a bigger surgery and a longer recovery. They told me to call them in the morning. I said, 'Great, I’ll call you at 7AM with the same answer.'"

After surgery, Kelly stayed in the hospital for 12 days, a longer than average stay due to a bowel obstruction surgery. But the transplant had been a success, and Kelly realized what her donation had made possible.

"They told me when I was feeling better, they’d get in touch with me if I wanted to share my story because it was kind of a big deal. That we were the first paired liver exchange in North America was a complete surprise to me."

A paired exchange involves at least two incompatible donor and recipient pairs. Donors are matched with compatible recipients to create new, compatible pairs. In the paired kidney exchange program, non-directed donors like Kelly set off domino chains, a series of matches, with the last pair on the chain donating to a patient on the waitlist.

While non-directed donors and their recipients are typically restricted to the exchange of one letter each, the participants of the first paired liver exchange were given the opportunity to meet. The second recipient declined, but the incompatible pair – a husband and wife – agreed.

They met privately, Kelly and her fiancée Harold, and Muhammad and Hina Khan.

"It was pretty amazing. They didn't tell me if I had donated to a male or female, but I had a feeling it was male. Muhammad just said, "are you my donor?" and I gave him a hug. I was overjoyed. He's such a kind man and Hina is such a sweetheart. We say we're family now."

Throughout their visit, Muhammad told Kelly that she looked just like he pictured her. He also had a question for her. "He said, 'Do you happen to like coffee, like really, really like coffee?' I nodded and he said 'I knew it!' He'd never ever drank a cup of coffee, only ever sometimes tea, and now he's a coffee addict like me."

In the fall, Kelly will join other living donors in speaking at schools in the GTA as part of an education initiative in UHN's Soham & Shaila Ajmera Family Transplant Centre.

"I just think that more people need to know about it. There’s a lot of people dying unnecessarily. It’s a small sacrifice for somebody’s life. We all take week long vacations, what’s wrong with spending a week at Toronto General?"

Kelly Bryan and daughter

In her own home, Kelly’s three children already understand the importance of living organ donation. "When I asked my oldest daughter if she would be okay if I did it she said, 'well yeah, I'm just waiting until I'm 18 and then I'm going to do it.' Apparently she learned about it in grade five."

With 18 just around the corner, Kelly is supportive, though understandably a little nervous. "It's exciting and scary at the same time. It's one thing to put myself through it. To be honest, I really wasn't worried for myself because I knew Toronto General provides world renowned healthcare. But it's different when it's your baby."

"In terms of a personal experience, it's enlightening. It's right up there with childbirth – you're giving the gift of life. It's hard to top on the joy list. I know exactly why she wants to do it. It makes you feel really good."