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Matt was luckier than most, for a while. "I always knew I had CF, but I hid it," he says. Until eighth grade he was the fastest miler in his school. His father, Kevin, got him interested in bicycle motocross racing, and between the ages of 6 and 14, Matt and his brother, Joseph, were addicted to it. He played basketball, was on the cross-country team, learned to surf.Then, in the summer after ninth grade, he was hospitalized for what he calls "a tune-up" -- three weeks of IV antibiotics to control a lung infestation of a common bacterium in people with CF. In the tenth grade he was infected with a rare and more insidious bacterium called Burkholderia cepacia (only three percent of CF patients ever get it). He'd given up running, and now, stick-thin and weak, had to give up surfing.
By his senior year, Matt was on oxygen. He stopped going to classes, barely left his room. It was clear that the disease had progressed to the point where the only option was a lung transplant. But, looking at the poor survival data for patients with B. cepacia, physicians at his local hospital were unwilling to offer Matt the expensive transplant procedure. The circle was closing around him.
What happened next was a series of coincidences that Matthew's mother, Debbie, describes as a miracle. First, she took part in a CF walkathon and happened to meet a young woman who'd had a successful double-lung transplant, in spite of being infected with B. cepacia. Debbie and Kevin -- who divorced when Matt was five years old but still remain friendly -- sought a second opinion and met with Dr. Pian of the University of California, San Diego School of Medicine. Pian was more optimistic: He knew that surgeons at Childrens Hospital Los Angeles, two hours away, had done transplants on CF patients with B. cepacia.
In the midst of this hopeful news, Matt continued to spiral downward. On October 15, 2000, he was taken by ambulance to Childrens Hospital L.A., but it was obvious he wouldn't live to see his name at the top of the long list of people awaiting a new set of lungs. His only hope was a living-donor transplant, a procedure performed less than 30 times a year in America. The human lung is made up of two or three lobes; a living donor can give up one and still have nearly normal breathing capacity. To turn the hope of a transplant into reality, however, Matt's family had to find two compatible donors, each willing to endure the risks of major surgery.
Back to the string of coincidences. Frederick Phillips, a 55-year-old lawyer from San Diego, happened to be a regular customer at the La Jolla supermarket where Debbie worked. Debbie told Fred that Matt was sinking, and Fred, whose own stepson has CF but was doing well, volunteered to donate a lobe. Another donor -- a woman who remains anonymous -- also materialized, and for a brief moment it seemed Matt would have his second chance at life. But when she failed the last of a long list of pre-surgery tests, Matt's family began to prepare for his death.
Fortunately, a backup donor was being tested at that very hour. His blood type was compatible, he met the height and fitness criteria, and his pulmonary function tests were off the charts. This man, Dave Manglos, had come forward by a route some would call coincidental, others an act of providence.
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