Tyler is the younger brother to Will, who was diagnosed with Minimal Change Disease at 25 years old. His disease quickly progressed to FSGS and then kidney failure. Will received a kidney from his mother, but the FSGS began attacking his new kidney soon after transplant.
We sat down with Tyler to hear about his recollections of that time and how Will’s experience with kidney disease changed his outlook and influenced his life decisions.
NKI: How old were you when Will first started having health issues due to his kidneys?
Tyler: I think that was spring of my sophomore year of college; I would have been 20 or 21. I can vividly remember the day that Will started feeling rough. Will, my other brother Grant, and my cousin and I went to go see my grandma, and Will was already feeling pretty bad. We went into a Publix supermarket on our way, and Publix has these huge scales that you can weigh yourself on. We were walking out and all weighed ourselves, and Will was 15 lbs. overweight. He got on it and said, “What the heck is going on? Will you guys get on this and see if your weight is accurate?” We all got on it and said, “Yeah, it’s normal for me…” He said, “I’ve gained 15 lbs. That’s so weird.” And he just felt terrible. When we were at my grandma’s, he took a nap pretty much the whole time we were there.
After that, a few doctors’ appointments later, he finally got diagnosed with Minimal Change Disease. It was almost a full year before they did a second biopsy and he got diagnosed with FSGS.
NKI: When did you realize how serious it was going to be?
Tyler: When he first got diagnosed, it was kind of well-controlled, and we had the understanding that MCD goes into remission with steroids. I had gone to Indonesia for two months that first summer that he was diagnosed with MCD, and he wasn’t really that sick at that time. But by the time I came back, he was starting to retain a lot of water weight. The steroids weren’t doing what they usually do, he was still putting on a lot of water weight, and it was hard for them to keep it off. I can vividly remember how puffy he was with all the edema. When they couldn’t figure out how to get it under control, it was really scary. He would just lay in bed all day, because if he stood up, all the water weight would go down to his legs. He had to lay flat. It got so bad that at one point he had stretch marks, and there was fluid coming out of the stretch marks because he had so much fluid. He was kind of kept prisoner by that. He just laid in bed all day. We felt so helpless because there was nothing we could do for him, and everything the doctors were trying wasn’t working. It was really frustrating and sad to see somebody you love suffering like that.
NKI: Were you guys close growing up? What kind of impact did this have on you as a family?
Tyler: We’d always been really close; we were really close growing up. Both of my brothers and I would hang out and do a lot of stuff together.
I had gotten really active with my faith and my religious life when I was in college, and at that time Will was in Kentucky in graduate school—this was before he got sick—and he was kind of trying to figure that stuff out too. So we got even closer talking about it. Then after he got sick, he became even more interested in trying to figure things out and make sense of his suffering. Having those kinds of conversations definitely brought us even closer together.
NKI: It seems like both your and Will’s later life decisions were in some ways influenced by Will’s experience with kidney disease. Could you talk a little bit about your decision to become a doctor?
Tyler: When I graduated from college, I went to Micronesia and taught high school for two years. My plan was to maybe go to graduate school or to seminary when I got back. But then, after I was there for a little bit, I realized that I didn’t want to go to seminary. I wanted to do something more hands on, I wanted to have a skill set that I could offer a community.
At the time, I was teaching biology in Micronesia and getting updates with what was going on with Will and the treatments that they were trying. I was trying to understand why Will was taking chemotherapy drugs, why they couldn’t figure out what was wrong with his kidneys, and why this was all happening so fast. I remember reading on Wikipedia all the time about these things and trying to understand it. This was all while I was teaching biology and getting really interested in the biological sciences.
That got me into thinking about medicine. Then, after being in Micronesia for about a year, Will had his kidneys removed because he was in kidney failure. I went home in December of my second year there for a few weeks for Will’s kidney transplant. I pretty much stayed in the hospital the whole time I was home because Will was there. I would go home to sleep and shower and then go hang out with him all day in the hospital.
When I was there with him, it all started to click for me: that medicine would be a good fit for everything that I was interested in. Seeing Will’s interactions with the doctors and seeing how much of it for Will was more than just a medical thing, that there was also this spiritual and psychiatric component of dealing with illness—that really appealed to me. After that, I was sure I wanted to go into medicine, and from there the idea of medical school took on a clearer form.
NKI: What was your reaction when you found out that the transplant wasn’t going to end up working out for Will?
Tyler: That’s another vivid memory. After Will had the transplant and the surgery was done, he had to go to the ICU because his blood pressure was out of whack and hard to control. My cousin and my brother and I were hanging out in the ICU a lot. I remember being in there when they told us that there was protein in his urine, which was a sign that the disease was already starting to damage his new kidney. And you could see on Will’s face, it was just the worst news you could imagine. It was heartbreaking. My mom was still in the hospital recovering from the surgery when Will found out that the surgery was not… that nothing would come of it. He hadn’t even had the kidney for a full month before they took it out.
He had had all these ideas in his head about what life after transplant was going to be like. You could see on his face, all of that had just gotten taken away from him. There was so much buildup going into it, for all of us, all of these expectations—that Will was going to get this transplant and everything was going to be better, that he was going to be able to travel all the time. My mom was a perfect match. Everything seemed so good going into it. Then just like that, it was all taken away. It was pretty devastating.
After that, I had to go back to Micronesia. When I was back there, Will had his third surgery where they took out my mom’s kidney.
NKI: I know Will has mentioned that he wouldn’t want another transplant until there’s a cure.
Tyler: Yeah, we talk about that every now and then, because having two brothers, Grant and I obviously wouldn’t think twice about giving our kidneys to him. But I think it was just so emotionally traumatic for him to go through that, that the thought of doing it again is overwhelming. He doesn’t want to ever have to experience that again.
NKI: When you think about the future, your hopes for yourself or your hopes for Will, is there anything in particular you focus on?
Tyler: I think about Will’s capacity to understand human suffering and to connect with it and make sense of it. I think about his ability to retain faith and hope, while also being able to help people get through their own suffering and help them make sense of it, too… I think he has the capacity to do that where few other people do, because of what he’s been through. His faith has become so important to him.
Most people that have changed the world or have gone on to do huge things, most of them either grew up under oppression or they had a traumatic experience when they were young that was a turning point and filled them with a sense of purpose and drive. I think that’s the redeeming part of all the suffering that Will’s dealt with. It’s given him this very clear sense of purpose and knowledge of what he wants to do with his life and how he wants to contribute to the world, in a way that other people who haven’t had to go through a negative and dark experience like that don’t necessarily have.
I think it’s impacted me in the same way, just obviously to a much lesser degree than it has him. But I think our capacity to confront suffering head-on and to try and make sense of it has been very much impacted by that. It definitely plays into how I envision myself taking care of patients.
So much of my own personal drive and sense of mission and purpose comes from the conviction that Will has of, to use religious language, of redeeming suffering. Of taking this negative thing and redeeming it to make it positive and to bring something productive out of it. I think that’s his whole understanding of suffering: that it’s not meaningless, and it’s not all negative. There’s so much good that can come out of it. It puts you in touch with other people in a way that life without suffering might not necessarily do.
We were delighted to sit down with Tyler and so moved by his thoughts and memories of his brother’s diagnosis, transplant, and continuing ordeal with chronic kidney disease. We’re so grateful to have such a committed family be part of our NephCure community.
You can meet Will, his family, and a community of NephCure supporters at the Tampa Pig Jig, which is held yearly in late October. Check back at the Tampa Pig Jig website to stay updated on the list of performers, schedule, and tickets.