Breathing in a New Life

Stenzel Sisters Survived Cystic Fibrosis to Compete in Transplant Games

By MICHAEL KAPLAN Special to the Palisadian-Post It’s your 10th birthday. You’re giddy at the sight of the frosting-covered cake, the familiar verses of the “Happy Birthday” song tickling your ear. Yet you can’t blow out your candles. No, they aren’t trick candles, you just can’t blow hard enough to extinguish the 10 tiny flames. Now you know what native Palisadians Anabel Stenzel and Isabel Stenzel-Byrnes felt like in 1982. Both were born with Cystic Fibrosis, a serious lung disease that inhibits breathing and hinders the development of the lungs. Rather than succumb to their condition, however, the identical twins learned to cope with it and, eventually, to triumph over it. A testament to their resiliency was their participation in this year’s USA Transplant Games June 16-21 in Louisville, Kentucky. Consisting of about 1,800 athletes who are organ recipients, the Transplant Games are a bi-annual meet sponsored by the National Kidney Foundation. Individuals compete for an area team in athletic events ranging from swimming to cycling to court sports and track and field. Competing for the Northern California squad, the Stenzel sisters made up half of the 200-meter Medley Relay team that took the gold medal, with Ana swimming the butterfly and Isa the backstroke. Ana also won a gold in the Individual Medley and the siblings were part of the foursome that took silver in the 400 Meter Relay during the track and field segment of the competition. With the average life expectancy for someone suffering from Cystic Fibrosis being between 35 and 42 years old, Ana and Isa, both 34, are beating the odds. Although they grew up in the Palisades, they now live within four miles of each other in Redwood City, a suburb of San Francisco, where they work at the Lucile-Packard Children’s Hospital. Until the age of 10, their disease did not faze the twins. “We were pretty normal,” Isa recalls. “We’d walk down the bluffs around Temescal and swim in the ocean and we’d go boogie boarding. That was one of our favorite activities.” While attending Marquez Elementary, the girls participated in gymnastics and joined the swim team at the Palisades-Malibu YMCA. However, their disease still lingered and they had to perform respiratory treatment on each other three to four times a day and make occasional visits to the hospital. “It really helped having someone around who was going through the same thing,” Ana says. “Not only did we physically share the disease, we shared it emotionally. It was a symbiotic relationship, especially when we would have to help each other with the respiratory treatment. We grew together and learned to handle it.” When they were 10, Ana and Isa’s condition worsened. They had to be hospitalized frequently and could not muster the energy to be as active as they had been in the past. “We tried to play sports, but with our illness it was hard to be competitive,” Isa says. “For this reason, we kind of fell back on our studies and sort of became nerds.” “We tried to be normal teenagers,” Ana adds. “We hung out with friends at Santa Monica Place and in the village. The great thing about growing up in the Palisades was that everyone was very kind and understanding of our illness. We never got teased or mistreated because of it.” After graduating from Palisades High in 1990, they both decided to attend Stanford University. It was that summer before their first semester in college that Ana’s condition got progressively worse. “I needed oxygen to walk, and everyday I would come home directly after class exhausted and had to take a nap,” Ana remembers. At age 25, she listed herself for a bilateral lung transplant. “Leading up to the surgery I was scared because there were times I couldn’t breathe and I was constantly having panic attacks,” Ana says. “I was scared that I would be too sick too get a transplant or that they would not find a lung for me while I was alive.” After a nine-hour surgery in June 2000 at Stanford, Ana’s battle with Cystic Fibrosis finally ended and she drew in her first pure breath of air. In one way, however, it was bittersweet because her twin still fought the disease everyday of her life. The same surgery became a serious consideration for Isa just before her 30th birthday when she began to suffer hemorrhaging in her lungs. “I got progressively sicker and I knew my lungs were getting old and weak,” she says. “I couldn’t breathe.” In February 2004, Isa went on a ventilator. With her life on the verge of ending, a lung arrived in the nick of time from an 18-year old man who had been killed in a car crash. As was her sister’s, Isa’s surgery was successful and she, at last, was given a new lease on life. After their surgeries, Ana and Isa looked to the outdoors and the world of exercise to increase their strength and enjoy the experiences they had been robbed of during their battle with Cystic Fibrosis. “I had always known the benefit of exercise,” Ana says. “It expanded my lungs, helped me grow stronger and feel better. I started setting goals for myself. ” Eight months after her surgery, Ana began biking 10 miles every day and in 2002, a friend told her about the Transplant Games, which she participated in for the first time later that year. “At first I didn’t know what to expect,” she admits. “I trained for three to four months but I didn’t win any medals.” After the Games in 2002, Ana joined the Redwood City women’s swim team in preparation for the 2004 Games. In the meantime, she climbed Half Dome in Yosemite and backpacked 20 miles on the weekends. She currently lives with their older brother, Ryuta, a 1988 PaliHi alum. Inspired by her sister and understanding the privilege of exercise, Isa decided to compete in the 2004 Games in Minneapolis alongside her sister. “I could only participate in a few events, but it was a great opportunity to meet recipients and donors from all across the country and celebrate life with so many people who were on the brink of losing it,” says Isa, who met her husband, Andrew, while attending Stanford and married him in 1998. Ana took home two medals in track and field in 2004 and competed in swimming competitions for the first time. Both sisters hope to compete in future Transplant Games. They believe they owe it to their donors who have blessed them with not only new lungs, but a new passion for living, and a chance to compete–something they never experienced growing up in the Palisades. “Although there is the natural stress that comes with competition at the Games, there is also a great community feeling of all these people who have experienced so much,” Isa reflects. “It really is a celebration.” Ana and Isa return to the Palisades at least twice a year to visit their parents and do a little boogie boarding. Of course, it is easier now that they can breathe in the fresh ocean air. “The Palisades is our home, the place where we grew up,” Ana reminisces. “The people there are family, and they helped us get through our fight.”