Breathing easy

They won't be able to do physical activities, doctors warned.

Ana recently won two bronze medals at the Transplant Games.

They won't be able to live a normal life, doctors cautioned.

Ana is a genetics counselor at Stanford University's Children Hospital and Isabel is recovering from lung transplant surgery. She also competed in the Games and helped Team Northern California to a volleyball gold medal.

The Stenzel twins are often referred to as miracles - and with good reason. Born with cystic fibrosis, a debilitating disease that destroys the lungs, Ana and Isabel have lived a life of pain, suffering and now, overwhelming joy. They entered the world two minutes apart, shared bedrooms, hospital rooms and looked into each other's eyes day after day only to see the agony each was going through. They've prayed for each other, constantly asking a higher power for help and relief. Isabel had not one, not two, but three near-death experiences. Her chronic infections led to massive bleeding in the lungs.

On the third occasion, on Feb. 5 of this year, the one that assuredly would be the final blow, the dagger that would signal an end to Isabel's life, Ana, along with friends, family and relatives, stood over Isabel as she lay on her bed unconscious, hooked up to a ventilator.

Knowing that Isabel could still hear her voice, Ana leaned over to her dying sister and whispered, "Isabel, if you're too tired, if this is too much, you can let go. It's OK. But if you want to stay, keep fighting!"

Isabel, who two weeks earlier had been put on the waiting list for a lung transplant, fought long enough. A family who had just lost one of their own children signed off on an organ donation. The organ donor's blood type and size matched Isabel's. The average wait for an organ donation ranges from 12 months to two years. Isabel had received one in two weeks.

"It was supernatural," Ana said. "I was bargaining with God a lot hoping my sister would live longer. On one hand I accepted that she had already lived much longer than anyone expected, but on the other I didn't want to lose her. I was ready to say good-bye. I was in a bit of denial."

Isabel underwent surgery on Feb. 6. She recovered faster than anyone could've imagined. With excitement and pride, she played in two of the six matches for the gold-medal winning Team Northern California volleyball squad in the Transplant Games from July 27 to Aug. 1 in Minneapolis. She's taking an aerobic class and going on long walks. Isabel and Ana hike together, something that was once impossible.

"I had this spiritual experience where I truly believed there was going to be a miracle," Isabel said. "I said this to doctors all the time. The times I was fading in and out of consciousness, I had this calm sense there would be a breakthrough. I only had a couple of days at most to live. How was it not a miracle?"

Ana's condition never became life threatening, but her lungs could give out anytime and her health was failing her. She underwent her transplant surgery on June 14, 2000. Soon, she was completing simple tasks she could never do before: swimming, running and blowing out candles on her birthday cake. She competed in the 2002 Transplant Games and later climbed Yosemite's Half Dome. At the '04 Games, Ana earned the bronze medal in the 50-meter breaststroke and 1,500-speed walk.

How did Ana and Isabel get here? They had lived all their lives in and out of hospitals for weeks at a time undergoing rigorous treatments that not only sapped their energy but nearly destroyed their will. How did they get here when the hospital stays only told half the story - at home, they had to stay disciplined to one another.

They had to pound each other's chest to loosen mucus and clear the lungs, hit each other's back to loosen secretion and make sure each was taking their inhalation treatments. Each of these tasks had to be performed four times a day to prevent their conditions from further deteriorating. The last two years before surgery, Isabel had to carry around an oxygen tank wherever she went.

They depended on each other, a brother, Ryuta, Isabel's husband, Andrew Byrnes, and two loving parents - a German father, Reiner, a Japanese mom, Hatsuko - who poured their heart and soul into helping their twins live an extra minute. Hatsuko went back to school and became a respiratory therapist. She used her knowledge and expertise to help Ana and Isabel combat the disease. Reiner is a physician at the University of California at Los Angeles, a no-nonsense guy who helped hold the family together.

"They were amazing," Ana said. "They were so dedicated, whether it was giving us moral support or when they were researching Cystic fibrosis and finding out the best way to treat us."

The parents were devastated when they had learned the twins were born with CF. Just 18 months earlier, Hatsuko gave birth to a healthy boy. Why did their twin daughters have to suffer? Why did taking two steps seem like two miles?

The twins have come a long way, but nothing is guaranteed. Ana and Isabel know that better than anyone. Survival rates for lung transplant patients after one year is 78 percent, according to The Organ Procurement and Transplantation Network, The United Network for Organ Sharing and the American Lung Association. After five years, it drops down to 45 percent. Compare that to heart, kidney and liver transplant patients, who have a 76 percent survival rate after five years.

Undergoing a lung transplant is a Catch-22, Ana said. Patients are eligible to be put on the waiting list only when their lungs are working 30 percent or below of normal. Go through with the surgery and there's a chance of rejection and imminent death.

"I was ambivalent at first," Ana said. "Having surgery is the highest risk possible and the poorest outcome if it fails. You're always afraid of the risk involved. You don't want to take more years off your life if it's not necessary."

Ana and Isabel feel they have a twin relationship unlike any other because of what they've gone through and their many similarities and goals. They attended Palisades (Pacific Palisades) High School, graduated from Stanford and received their master's degree at the University of California at Berkeley. They were both biology majors and like arts and crafts. The two live five minutes apart in Redwood City.

"She's basically me in a different body," Ana said. "We're so symbiotic we're one. People still get us mixed up all the time."

Said Isabel: "We keep each other alive. She's my role model. She was the pioneer and showed me it could be done. Having CF is a hidden blessing. It really brought our family together. My parents grew up during World War II and part of their philosophy is that 'struggle is good. Enduring the struggle and overcoming it makes you a stronger person.'"

The twins are very active in the CF community, taking part in fund-raisers and spreading awareness of lung transplant procedures through their own stories. They are grateful for a new lease on life. They've completed a rough draft of their book, "The Power of Two," which they hope to get published in six months. Isabel and Ana have made every second count.

"I wouldn't wish CF on my worst enemy," Isabel said. "But I am very grateful and blessed to have met so many people who've had CF and to see how strong they were. I do think about the five-year survival rate sometimes. It's scary, but the truth is, we've gotten so much out of life."

They once gasped for air. The breaths come easy now.