The Patient’s Politician

Maxine Phoenix

Austin L. spends his free time volunteering. When he’s not volunteering for fun, he’s volunteering for work, mentoring young people who have kidney disease and traveling the country speaking about his experiences of living with this illness. And his day job? Kindergarten teacher. The man does it all and does it with an exuberant smile, grounded attitude, and aspirational mind. He takes “giving back” to a new level, and it all started when his kidney transplant failed.

At age four, Austin received his first donated kidney, but at age seventeen, the kidney stopped working. Austin had to go on dialysis and transitioned from pediatric to adult care. That first kidney came from Austin’s mother, the second as part of a fourteen-way kidney swap. On the subject of his gratitude, Austin shares: “You never really know what to say. Giving back, for me, is how I say thank you.” One of the most important things Austin loves is to mentor younger people who are on dialysis or have had transplants. “Ultimately, I’m happy that it happened,” he says in regard to his first kidney failing. “Now I’ve been able to help all of these people as I have a deeper understanding of loss.” Currently, Austin is entering the fourteenth year of having his second kidney—“A great way to start the year,” he remarks with a smile in his voice.

Austin and RSN Founder Lori Hartwell at the 25th Prom

Austin currently resides in Washington D.C. The political atmosphere, vibrant energy of the city, and constant awareness of the ability to make changes drives him even more in his work. He advocates for research into unknown kidney disease in pediatrics, works with lower income families in the D.C. area, with the local unhoused community, and chaperones youth trips for kids who haven’t been able to travel out of their hometown before. Austin was born in Germany originally, but when he was diagnosed with kidney failure as a young child the family moved to Washington D.C. so he could receive care at the Walter Reed Medical Center. He’s the youngest of five siblings (three brothers, one sister) and they’ve all stayed close—at the time of our interview, Austin remarks that he had just gotten off of the phone with his brother who lives in Vegas. Bashfully, Austin shares that he hopes to start a family of his own when he’s ready—he loves kids, and working with them daily has prepared him in nearly all ways possible to become a father.

I ask how his dating life has been and Austin laughs. “Great question.” He sees the romantic equation of his life as something that will happen when it happens. “I’m in the ‘let it come to me’ phase of my life,” he says. “Though I am open to making sacrifices for the right thing.” Right person, too. It’s important to him to still maintain his sense of self within a relationship, to continue to give back to his community while also being able to give to his partner. “Kidney disease definitely hasn’t affected my dating life in a negative way,” Austin clarifies. He’s never actually had to bring it up on a date because of how much he’s opened up about his past online. Austin’s done interviews with the Baltimore Times and WUSA9, one of D.C.’s most prominent news stations, sharing about his advocacy and gratitude for his “new lease on life” following his second transplant. “My story’s out there, or maybe someone saw stuff on Instagram. Or knew me through my older siblings.” One of the things that makes him roll his eyes and laugh is when people ask him on dates “are you sure you can have wine?” just because of his history with his kidneys. “I know myself!”

Austin’s ability to give back is inspiring. Surely, that is what keeps him so incredibly vibrant and healthy, as well as his gratitude for that health. Teaching young children brings him joy and peace. “I find that it’s given me a lot of patience, too,” Austin remarks. “And I always have sympathy when kids are ill. I’ve been there myself.” He not only loves teaching but helping the children reach milestones and connecting with their families. “Everyone develops at their own pace. You really have to stay patient.” On the side, Austin will occasionally take care of dogs and tutor other children. I ask him how he’s able to stay grounded with as busy as he is, and he immediately responds: “Laughter. And having a positive attitude.” Austin shares that he also finds solace in taking walks, listening to podcasts, and leaning on both his family and his church community. “Gets me through the dark times.” On top of all the other advocacy work he does, Austin is currently a Make-A-Wish “Wish Granter,” helping to grant wishes to children in the DMV area (D.C., Maryland, Virginia). When he was fourteen, he went to Disney World via Make-A-Wish and occasionally will go back to visit a nonprofit in Florida, “Give Kids the World,” which provides housing for the Make-A-Wish kids and their families. As an alumnus, he’s able to return and stay—and, one day, bring his future family along with him.

Travel is an inherent part of Austin’s life. Recently, he went to New York City with a youth group as a chaperone, and an opportunity arose for him to share about his kidney transplant journey. Suddenly, he was educating a group of kids who didn’t know anything about what it meant to be an organ donor or receive transplants, and he proudly shares that many of them asked him, “How can I become a donor!?” He’s also been traveling the country, advocating for the kidney community. Recently, he went to Philadelphia for the first time, presenting at Kidney Week to to a panel of nurses and nephrologists from around the world. “The food was amazing…and so was the opportunity to be on that platform.” When I ask if he was scared, Austin laughs and admits that yes, he was nervous, but only for the first minute and a half. Then he felt incredibly relaxed. He shares that he told a joke in the beginning to get the crowd to open up , leaning on humor, as he does. “I’m not sure if I’m shaking because I’m nervous or if it’s the Tacrolimus [a medication that can have a side effect of shaking].” After the kidney community in-joke, he owned the room.

Austin feels that he’s meant to do this: to share with others, to educate, and to mentor. “If I hadn’t lost that first transplant, I wouldn’t be doing what I’m doing now.” Before receiving that second transplant, Austin started a “Transplant Bucket List,” with things he wanted to do once he was able to have another transplant. A lot of that has involved travel, of course. “You are able to travel on dialysis, but I wanted to feel a little less restricted.” He crossed one of the big items off this year: going to Aruba. On the list, too, is going back to his birthplace, Germany.

Austin Lee shares his journey with Prom Zoom attendees

When asked what advice he would give to others experiencing what he’s experienced, Austin’s voice slows a bit, and I can hear the public speaker in him, the mentor. “Understand that the journey is far from over. It’s just like a book—you’re only beginning to write your story. You can still accomplish all of your dreams; this is just a small roadblock that you have to go around.” He laughs a bit, leaning into the metaphor. “Take that…car…back it up, reverse it, find a new direction, then keep on going.” Austin also expands upon the importance of connecting with others who are going through a similar journey with kidney disease. “It can be hard for teenagers to open up to doctors.” We chat about the Renal Teen Prom, which Austin has attended several times, once when he was on dialysis then after he had that second transplant. It was incredibly important to him, having missed his own high school prom. “I got connected with Lori [Hartwell], and she donated airline miles for me to fly down the first time.” Austin also helped Lori to plan a Renal Teen Prom in the D.C. area, which was an incredible experience.

I ask Austin what he ultimately wants to do, or technically, what else he could possibly fit into his incredibly busy, philanthropic life. “As I get older, I want to accomplish all my dreams. I want to become a child life specialist at a hospital.” He’s currently finishing school, in the midst of everything else, and knows that when he’s finished more opportunities may be revealed for him in other parts of the country. D.C. has been great to him, but he’s open to whatever happens after completing his program. “Going into this New Year right now, I’m taking it all one day at a time. Letting the year come to me.” He knows the world holds much more in store. “I want to continue to inspire the youth. I almost feel like a veteran to the younger people now—I want to make sure their future is in good hands.” Indeed. He shares his three words to describe himself as “Kind, Caring, Ambitious,” and follows it with a charming laugh. Austin is the type of leader one could only hope for—using his own experience as a North Star to guide him and pulling from an endless well of gratitude for being alive. A true leader to watch, with great things to come.


Maxine Phoenix is a freelance writer and she also volunteers for RSN.

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