Despite being born with the incurable genetic lung disease cystic fibrosis (CF), Isabel Stenzel Byrnes and her twin sister, Anabel Stenzel Byrnes, persevered to live rich lives and become advocates for organ donation and transplantation. Born in Los Angeles in 1972 to Japanese and German immigrants Hatsuko and Reiner Stenzel, doctors diagnosed Isabel and Anabel days after their birth with CF, a disease that causes a buildup of mucus and infection in the lungs, and told their parents that the twins would likely not live to see their 10th birthdays.
“We had to grow up very quickly,” said Isabel about their childhood. ”It was a very hard disease to live with physically, but also emotionally, because we knew from a very young age that our lives would be shortened.”
Taken out of school because of lung infections that had them constantly in and out of hospitals, the girls grew up to depend on each other deeply, comforting and supporting each other with their presence and the knowledge that they were both fighting the disease together.
Beginning a long history of breaking the odds, Anabel and Isabel persevered despite the disease and both ended up graduating from Stanford University, and going on to receive master’s degrees from the University of California at Berkeley. Isabel studied social welfare and public health, while Anabel graduated as a genetic counselor.
Liberation by Transplantation
Eventually, the progression of the disease reached a point where something had to be done. When Anabel was 24 and her lung capacity had decreased to 30 percent, she was put a waiting list to receive a lung transplant. Four years later she got it.
It was around this time that the twins started writing a memoir of their lives, called “The Power of Two.” They would assign each other chapters to write and look over them in the evenings, comparing notes and bickering about how things really happened.
“It was a wonderful creative process,” said Isabel. “When you’ve had a transplant and have been saved, it’s such a confusing, overwhelming experience that being able to review and reevaluate what happened to us was very healing.”
In 2004, Isabel developed respiratory failure. Just as she was about to receive her own lung transplant, Anabel was writing one of the last chapters of the memoir titled, “The Miracle.” It ended up being the story of Isabel’s transplant, which was a success.
As if a set of twins receiving two successful lung transplants wasn’t extraordinary enough, when Anabel’s body began rejecting her transplanted lungs, she received a second double lung transplant— again, a success.
As both twins were recovering, their memoir was published and became a great success.
“As two people who received organ transplants and were healthy, we had tremendous energy that we’d never had in our lives, so we set goals to just explore life, to travel,” said Isabel.
Isabel and Anabel used their newfound health and strength to attend book tours, speaking engagements, and public events all over the United States. They traveled to Japan and Germany, and used their experiences to become powerful advocates for organ donation. “The Power of Two: A Twin Triumph Over Cystic Fibrosis” was even turned into a movie. Isabel also spent much of her time experimenting. “I was seeing if I could run, seeing if I could swim, and I could!” she said.
Her first goal was to run, so she set herself the goal of running a mile at the one-year anniversary of her transplant. She tested her limits, hiking the Half Dome trail in Yosemite National Park, which would have been impossible before the transplant because her CF made the thin air at high altitudes dangerous.
Isabel ran and swam competitively (which she still does to this day) and participated in and won events at the American Transplant Games. She even learned to play the bagpipes. “It was liberating,” said Isabel.
A New Chapter
In September 2013, Anabel passed away during a struggle with small bowel cancer. She left the world with grace, surrounded by friends and family and grateful for the time that her donor had given her.
Isabel speaks of her sister’s life with pride. “She’s lived three, four lives actually. Ultimately, though she died, she really beat the odds beyond anybody. And that’s what we choose to celebrate,” she said.
Although her cancer prevented her from donating her organs, Ana was able to donate her corneas, giving two people in Maryland the ability to see.
Last year, Isabel took some time off from organ donation advocacy to deal with her own grief over Anabel’s passing, “to figure things out and get back to some kind of equilibrium.” Right now she works three days a week as a bereavement counselor at a local hospice and travels and speaks at events. She aims to get back into organ donation advocacy soon.
“It’s very difficult to lose an identical twin because I’ve never been alone, never been single,” Isabel said. “I’ve never had the experience where I’ve not been able to call Ana and talk to her.”
Despite her deep grief, Isabel realized that there was one person that she had to keep living for: her donor, Xavier Cervantes.
“The fact that somebody died and gave me life, I cannot sit around moping and feeling sorry for myself. I feel like my donor has saved me twice, because his memories, his legacy in me, is forcing me in some way to cherish every day that I have even if I’m sad in my life without Ana. I’m still breathing well, I’m swimming, I have a very normal, vigorous, exhausting job. I live a very normal life and next week will be 11 years. So, I’m so blessed.”
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