Participant: Isabel Stenzel Byrnes

Isabel Stenzel Byrnes

Isabel Stenzel Byrnes

Lung Recipient and Donor Sister, Redwood City

Events: Bocce Ball, Cycling, Swimming, Track & Field, Virtual Triathlon

When I was a young child, I was always encouraged to be active. But being born with cystic fibrosis (CF) meant that any cardiovascular activity would throw me into loud, prolonged and violent coughing fits. So, I never dreamed of participating in any athletic competition, or even calling myself an “athlete.”

My journey with CF did, however, teach me about endurance, focus, discipline, teamwork and most importantly, optimism. Thankfully, my twin sister Ana and I survived to adulthood, when a medical miracle called lung transplantation had become a reality for those with CF. Ana was transplanted in 2000, and I followed her in 2004. My transplant experience was dramatic, to say the least: after years of living with advanced stage CF, I plummeted into lung failure and was placed on a ventilator. Having just been listed two weeks earlier, my family prayed for a donor. After 24 hours on the ventilator, a miracle arrived, and I was given the gift of healthy lungs from a young hero, Xavier Cervantes, who died tragically in a car accident just hours away.

I awoke with a profound sense of gratitude and awe. Ana encouraged me to join her and participate in the Transplant Games of America, held every two years in different cities around the country. I first participated when I was only 6 months post-transplant, where I race-walked 1500 meters and played volleyball— not much, but a seed was planted for my love of the Games. The exhilaration, the supreme manifestation of the human spirit and the inspirational, life-affirming celebratory community were like no other.

I have attended the Transplant Games six times, bringing home shiny medals each time. I joined Team NorCal in order to build community, share a message of the success of organ donation, and to honor my lung donor by setting personal fitness goals. I love swimming, because with every inhale and exhale I get to hear and feel my donor working within me. And there’s no coughing! I am not a strong sprinter, but I do my best and love screaming at the top of my lungs to cheer my teammates on.  I run because I can, and never could before. I am pushing my heart and lungs to their maximum capacity, which is very hard work but also a blessed privilege.  But most importantly, I participate in the Games to raise awareness of organ and tissue donation. I volunteer for Donor Network West and am on the Donate Life California board of advisors. I’ve also served on several United Network of Organ Sharing (UNOS) committees. Ana and I wrote a book and were featured in a documentary film called “The Power of Two,” to use our story to educate the public about cystic fibrosis and organ donation. Still, though, the Games are the best way to show the world that being a donor is the right thing to do.

For my first five Games, I’ve had my dear sister Ana race alongside me. After receiving two lung transplants, Ana lost her battle to cancer in 2013. She died in hospice, at home, but was able to donate her cornea. Before she died, she made me promise I’d keep going to the Games if I physically could. In my grief, the Games help me recognize that Ana’s death still has meaning—she gave sight to two people. The community of fellow grievers who valued helping others beyond our own grief, helps me feel less alone and more connected. I feel closer to Ana’s spirit and keep her alive through stories.