A Night to Remember
Her excitement, though, has a special edge. Three years ago, Schweitzer was diagnosed with primary pulmonary hypertension, a rare and incurable lung disease that strikes 400 people a year in the U.S. A form of high blood pressure that is nearly always fatal, PPH constricts blood vessels in the lungs, causing shortness of breath, fatigue and an overworked heart that can lead to cardiac arrest. In the past some patients with PPH have been treated with conventional blood thinners and heart drugs such as digitalis; others have been given lung transplants. But Schweitzer is one of nearly 200 PPH patients using an experimental drug called prostacyclin, which dilates the pulmonary arteries and may promote healing of the damaged vessels. It must be fed into the bloodstream continuously, so Schweitzer carries a small battery-powered pump that delivers medication through a catheter into a vein in her chest. The system, awkward as it is, has given Schweitzer an incalculable gift: it has let her be a teenager. Says her father, Rick, 41, a freight company manager: "I feel relieved and happy that she's getting to do what a normal kid should do. I never thought I'd see this day."
It was in the spring of 1992 that Schweitzer, a skier and dancer, began experiencing shortness of breath during practice sessions with the cheerleading team. Local doctors diagnosed her with PPH in July; when conventional treatment proved ineffective, her father and her mother, Sue Gudbangen, 42 (the couple divorced in 1988 and each is remarried), decided to consult Dr. Stuart Rich, chief of cardiology at the University of Illinois at Chicago Medical Center. In November he reconfirmed the diagnosis. Connie, he warned, might not survive more than two years. "I remember being told I was going to die," she says. "I didn't cry. I think I was in shock."
Doctors presented Schweitzer and her parents with two options: a lung transplant or the experimental prostacyclin. Schweitzer temporized for five months and finally opted for the pump. It was installed in December 1992, and her fears almost immediately gave way to relief when she began to feel the drug's effects. "I could breathe easier right away," says Schweitzer, who has lived with her father for the past two years. "Within a month I could walk, climb stairs, even dance."
For all her restored vitality, Schweitzer gets periodic reminders that she can't take her health for granted. Once, her catheter tube sprang a leak while she was at school. Another time she was put on IV antibiotics for six weeks after she infected herself when replacing the tubing. "At first I made only very short-term goals: to be in a dance recital and getting my driver's license," she says. "Now I'm making longer-term goals. I'm going to Northern Illinois University in the fall, and I'd like to become a nurse to work with terminally ill children."
Now, following her prom, there is high school graduation on June 2 and, a week later, a modern-dance recital solo. "Your life can't stop because you have a disease," says Schweitzer. "The hardest thing for me is figuring out how I'm going to accomplish everything I want to do."
BARBARA SANDLER in Elgin