Bond of Brothers

Craig and Kevin Settee, Fisher River Cree Nation

Image from UHN Centre for Living Organ Donation “Great Actions Leave a Mark Campaign”

The inspiring story of Kevin and Craig Settee: How Family and Community Supported a Journey from Diagnosis to Transplant

Kevin and Craig Settee were very young when they faced some extremely adult issues. At only ten years of age, Kevin and his family received the devasting news that he had kidney disease, a diagnosis which changed his childhood.

Surrounded by the love and support of his family and community including from his brother, Craig, who eventually donated one of his kidneys to Kevin. Kidney Magazine (KM) spoke to the brothers about their journey.

KM: Thank you, Craig and Kevin for sharing your story with us. How did you first know something was not right with your health, Kevin?

Kevin: I was at my grandparents’ place for a sleepover, and I remember being sick with a fever and chills. Just not feeling one hundred percent. When I woke up the next morning, I went to use the bathroom and my urine look really dark—it almost looked like blood. I got really scared. I called my dad and my grandparents and said, hey, look at this. Something’s wrong with me, I think. Everyone got worried.

We went to the family doctor, and they did some tests and I got my first needle. I remember that was very scary for me, getting my first needle. I remember I was shaking; my arm was shaking. The results came back fairly quickly, and they said I’d need to go to the hospital. I think it was like the next day. I remember meeting with a pediatric nephrologist—a kidney doctor they told me—and they did more tests. By the end of the week, we learned I had kidney disease. I had more tests over the next month and then started different medications to try to put me into remission because my kidneys were suffering.

That whole experience was hard for me. It was also a confusing time and a scary time. And, in terms of symptoms, I didn’t really feel much, just aside from when I was sick, but I did have to adjust to some of the medications. But, you know, I’m glad that we have a good healthcare system here in Canada and have really good doctors at the Health Science Centre here in Winnipeg. They helped me a lot.

KM: You were so young when you were diagnosed. How did life change after your diagnosis of kidney disease?

Kevin: I think our childhood was good, much like many other kids our age. For me, I felt like I was surrounded with a lot of love and opportunity. Growing up in Winnipeg, there was always lots going on. But I also really enjoyed getting out of the city. Our grandparents were a big part of our childhood, and they used to take us to our family cabin on Matheson Island in Manitoba every summer. And, of course, I had a big brother to look up to as well. I always wanted to be like my big brother.

Craig: I would share Kevin’s sentiments. Lots of fond memories. We were a very close family. Growing up, we had our paternal grandparents who took us to Matheson Island, as Kevin said, and our grandparents from my mom’s side of the family who instilled a lot of Indigenous teachings in us. While we didn’t know it at the time, it would help guide us in the years to follow. They took us to a lot of places, including the reserve in Dauphin River First Nation in Manitoba where my mom lived until she was elementary school age and then she moved to Winnipeg with her mom. We grew up in the inner city of Winnipeg in a neighbourhood with lots of other kids our age, with summers filled with bike rides and in the winter it was all about hockey. We played on a little ice rink we built ourselves. We didn’t have cellphones or access to the internet yet, but we did have a real sense of community.

Kevin: I got sick more frequently and I felt like the sicknesses were getting more intense. I was also getting really bad cramps all the time, including when I tried to play sports. I’d be sick during hockey games, but I would still play even though I was sick. Sometimes I’d have to get off the ice and sit in the dressing room. My dad or mom would come in and support me. Sometimes this all made me cry and I remember thinking, why am I going through this? I know I shouldn’t be experiencing this at such a young age. I just want to play hockey. So that was really hard to go through.

KM: Aside from the physical symptoms, you also mentioned the isolation you felt. Can you explain what that was like?

Kevin: It was hard because I was young, and I didn’t know anybody else my age who was going through what I was going through. I didn’t really have people to really talk to. The onlytime I had an opportunity to hang out with other kids who were affected by kidney disease was when I went to the Kidney Foundation’s Camp Stevens in Ontario, and we all stayed in the cabin together and it was really fun. It felt good to be around other kids who were experiencing similar health issues. I think at that time I was in remission, so I was feeling pretty healthy. I felt a bit more normal. But it wasn’t until dialysis that I really experienced isolation and really had to kind of pull myself up often.

KM: Tell us about your experience on dialysis.

Kevin: It all happened pretty quickly. The doctors told me my kidney function was going down fast when I was 18 or 19 and that I’d have to start thinking about dialysis, and if I wanted peritoneal or hemodialysis. It was crazy all the things coming at me. I was 19 when I started peritoneal dialysis and was on it for two years. I knew about dialysis because my grandfather had kidney disease and we used to go visit him when he did his dialysis in Winnipeg. I remember the fistula in his arm. That really stood out to me as a young kid. I also knew how hard kidney disease and dialysis was for him, and so when I was told I had to start dialysis, I had a lot of apprehension.

Dialysis meant some real changes in my life also, including not being able to play contact sports like hockey or travelling. I love adventure and meeting people and all that was a lot more challenging. That led to more feelings of isolation. So, yeah. That’s a lot as a young person on anyone. Right? A lot on your shoulders to have all these things coming at you so quickly.

KM: Kidney disease does not just affect the patient, but the whole family. As Kevin’s only sibling how did his diagnosis impact you, Craig?

Kevin Settee

Craig: I’m five and a half years older than Kevin, so when he was diagnosed I was in my teens and in high school and I didn’t fully understand the extent of the diagnosis of chronic kidney disease. I guess I was just trying to navigate being a teen and not sure what this all meant. I knew Kevin was taking medications for his kidneys and our parents would go to appointments and look after him. What I did notice was the effects of some medications on Kevin, which caused him to retain a lot of water. I also knew how hard the cramps were for him and that he didn’t have the energy levels and couldn’t exercise like before. He’s a really good athlete but his body wasn’t allowing him to perform how he wanted it to or to spend the time that he wanted to playing sports like hockey, lacrosse or baseball or even just riding his bike around.

But I really didn’t dive a lot into educating myself about kidney disease at that point. I think it took me a bit longer until my early twenties when the disease started to progress. We started to hear conversations with the health care team around potentially looking at options for going on the transplant waitlist and looking for a living donor. That’s where I think it piqued my interest a lot more about what’s going to happen next.

KM: Craig, you have said being Kevin’s kidney donor was something you needed to do. Tell us about that.

Craig: When the conversations started to happen with Kevin and my parents about finding a living donor, I would attend some of the appointments as well. We talked about who do we reach out to in the community and how. Both my parents were facing some of their own health issues, but fortunately for us our mom is a really gifted planner and organizer and so she was really able to help put that call out, reach out to people from our Indigenous community and people from our ceremonial community. My mom’s also an educator and so she shared that message with that community, too.

And, of course, we did a lot of prayers as well asking for the wellness of my brother. Part of these prayers I think, for me, was to be able to be that donor. A lot of people stepped up to be tested, including my uncle. I also wanted to be tested.

Through the many conversations we had, I began to discover something about myself. It was a deep knowing that I wanted to be Kevin’s donor. I wanted to do this for him.

I wanted to go through the process and be tested. So that’s exactly what I did.

Turned out Uncle and I were the closest matches for Kevin, but because of some of our uncle’s health issues, I was the best match. I was very happy as I wanted to be that person and do that for my little brother. I remember how thorough the donor work up process was, which is good. They really make sure you are healthy in all ways. I remember the session with the psychologist and exploring why I was doing this. I said it’s my family. I said that’s my little brother. I’m doing this because I want to see him not be on dialysis and to be able to live that life with a new kidney. You learn a lot about yourself when you step up to be a donor, it’s not just physical but mental and spiritual as well.

KM: Kevin you said as a child you always looked up to your big brother Craig, and wanted to be like him, so what was it like to learn he was now going to your kidney donor?

Kevin: I’ll share a little story. My mom, Craig, and his fiancé were going for a meeting at the hospital; it was kind of like the last meeting with the transplant team to determine whether or not I was going to be the right match. I was sitting in the parking lot because I couldn’t go. I remember sitting there, just waiting and waiting and waiting. It was very hard because I remember my uncle when he came to my place to tell me he wasn’t the right match. You just never know. But as I sat there waiting, all these questions kept going through my mind. Am I going to have to do dialysis forever? Am I going to survive? There were some nights where I felt like I wasn’t going to get through it all.

So, as I’m thinking about all this stuff, I get a phone call from Craig who said to come and meet them outside. I remember they were across the street and I was on the other side and we walked and kind of met halfway on the street.

What I could see made my heart almost stop as they all looked kind of sad. And then a second later I could see my brother kind of smile, and then they all started smiling. And then Craig gave me a hug and said, yeah, I’m going to be your donor.

And I just remember thinking, yes, yes, yes! Words cannot describe how happy I felt.

As Craig said to me after, in the darkest of times sometimes we need to find humour in some way. Even though the humour can seem dark as well, it can help. The laughter and joy it brought us after and sense of relief, it was good for all of us. I remember them saying they want to do the transplant right away. And even though my wait time for surgery was only a few months, it seemed like eternity.

KM: Yes, many people say the waiting is the hardest part throughout the process. But when the day of surgery finally did arrive, describe for us what that was like.

Craig: The healthcare team was excellent, explaining exactly what would happen. But it didn’t feel real to me until I was being wheeled down the hallway on the morning of the transplant. So, it’s like, all right, this is happening. Seeing my mom and my partner and hearing them say we’ll see you on the other side. See you in the recovery room and, yeah, that’s when it got real for me. And I just remember those questions in the operating room, you know, what’s your name? What are we doing today? Kidney. Kidney transplant. Which kidney? Count to ten for me. And then I was out.

Kevin: You know getting worked up to receive this kidney is incredible, I mean, emotionally, physically, everything. I remember going into the hospital as I did my last dialysis at home that morning. I remember getting wheeled into the operating room and the surgeon had music playing on the radio. I guess he liked listening to music while he performed operations. I remember a nurse looking at me and saying it’s going to be alright and to try to relax because my heart rate was beating so fast as I was pretty nervous. And then I too remember them asking me to count to ten. And in a millisecond I was asleep.

And when I woke up, the first thing I did was I put my hand on my stomach and my catheter was gone and so I knew that my kidney was working. I remember feeling overwhelmed with emotion. And my mom was there, and she said, Kevin, everything went great. And you’re going to be okay. And the doctors came up to me and said the same thing and told me several times to just rest and not to move around too much. I remember putting my headphones on and listening to music and falling back asleep and then waking up in the room with my brother.

KM: Kevin, tell us about waking up after surgery and seeing Craig in your room.

Kevin: It was pretty intense. Craig and I were always very, very close. I think this process just reinforced all that and brought us even closer. I just felt this incredible bond and really indebted to my brother. But, you know, the way that I have thought about it is like I’ve been given a second chance at life.

The best way to honour my brother is to live the best and most fulfilling life that I can and to take care of the kidney. To live healthy and eat well and not drink and take care of myself and take care of my kids.

KM: And for you Craig, how did you feel?

Craig: I felt pretty good. But for me, I knew I’d be OK, I was just so happy my transplanted kidney was working and to have my little brother feeling better. That was the biggest gift for me. It was funny to see the celebrations when he was able to pee, because they know then that the kidneys were working. I’d never seen people laughing and giving high fives and cheering for one to go to the bathroom. Plus, I was very grateful that we got to be in the same room together after surgery to heal and recover together.

KM: Now that it’s twelve years since the surgery, how are you both doing?

Kevin: I’m doing really well. I think we’re both doing really well. Our lives are full with families and work. Even though we don’t get to see each other as much as we want—I live in Winnipeg and Craig’s in Vancouver—we have an incredible bond and connection.

Craig: As Kevin said, we are very close, and this definitely strengthened our bond. I am always going to look out for him and support him and be there for him. I think probably the greatest way that I could be there for him is to literally give him a part of myself and just recover and live life together. But I like to joke with him, too. We dress the same sometimes, like wearing the exact same outfit or same colour shoes, and not on purpose.

I joke about how my kidney is influencing his clothing choices.

KM: You both speak about having a lot of support from your family and community.

Kevin and Craig Settee

Craig: Kevin and I are really appreciative of the incredible support from our own community. For example, when we were getting our work up done for the transplant, we held a fundraiser in Winnipeg. It was called a blood, sweat, and steak thing. We had food, music, silent auction, door prizes and people from our community bought tickets to come to the event and really supported us financially. That really helped us take the time we needed to recover from surgery, as well as with comfort items to make our recovery easier. We are also grateful to the Kidney Foundation and their Living Organ Donor Expense Reimbursement Program, which also supported us with out-of-pocket costs related to transplant expenses. We are so grateful for all our friends, family and our wider community who put us in their prayers and helped us with emotional support.

KM: This has been a life-changing experience for you both in so many ways. I understand you’ve made it your mission to share your story to help others in similar situations, and raise awareness about the importance of organ donation.

Kevin: I think for me, because of thehealth issues that I went through and because of my parents’ health issues, I really had to learn how to handle life—how to deal with life when it gets hard and difficult. I felt like going through all this at such a young age really prepared me for the challenges of life and how to deal with hard situations and, so, yeah, during that time I learned life hacks, I guess to help me, help myself.

I really understand the importance of health and taking care of myself and encouraging other people to take care of themselves as well. Just like that term—your health is your wealth. And it’s really true because I remember going home from the hospital and my body felt so light, like I felt like my body was like a feather. I felt like my vision was so clear, like I could see everything so clearly. And, yeah, when you’re sick, sometimes you don’t even notice that what you’re going through is not normal. I really understood that when I got home.

I always try to remind people we need to take care of ourselves to the best of our abilities. I would just say for Indigenous peoples not to be scared of transplantation, not to be scared of receiving a kidney or giving a kidney as well. To help give someone a second chance at life. I think everybody deserves to live. And I don’t think that people should feel bad for receiving a kidney, because I think some people do feel bad. I think some feel wary of it or they feel they don’t deserve it, but I’m a firm believer we all have gifts, and we all have a purpose. And that if you need an extension of life, you should take it and live out your life to the best of your abilities.

Craig: We share our story wherever we can. We’ve been able to travel across the country and internationally, as well. That’s really opened opportunities for us to also connect with the kidney community, connect with other people who are organ donors and organ transplant recipients and hear their stories, as well. We had an opportunity to travel to Australia to the World Congress of Nephrology Conference and share our experience and to also hear experiences from other Indigenous people from New Zealand and Australia.

We also participated in an organ donation campaign called Great Actions Leave a Mark. It’s about being proud of the scars from being an organ donor and that those scars represent the gift of life. We also had the opportunity to partner with Dr. Caroline Tait, Canada Research Chair, University of Calgary, to produce an animated video, called “Sacred Gift,” based on our story. Kevin is a photographer and also works in the film industry, which helps us share our story, and I work as a project and team coordinator with the First Nations Health Authority. But we also do a lot of volunteer work, including my role as a board member of the Kidney Foundation, BC and Yukon Branch.

One of the most positive things about sharing our story has been people asking us about kidney disease and the process of becoming a donor. We’re so happy to have those conversations.

Stories are a great way to impart information and if there’s any way our experience or story can help make someone’s kidney journey easier or help someone think about becoming an organ donor, then that’s a big win in our books.

We plan on doing this for a long time. Let’s just say we have lots of story left in us to tell.

KM: Well, you have a very inspiring story to share. Thank you for sharing it with Kidney Magazine.

Contributor: Deborah Tucker