Although she was only 6 years old, Kellisa Myers clearly remembers the first time she saw her mother cry. It happened the day her family learned that cystic fibrosis (CF) was the cause of the first-grader's chronic respiratory problems and inability to gain weight. Since then, Kellisa, now 19, and her parents have become experts on how to live with this life-threatening disease. The family credits physicians and staff at Miller Children’s Hospital Long Beach for helping Kellisa maintain her health and lead a near-normal life, including attending all her proms, serving as editor of her high school yearbook and having a wide circle of friends.
With 25 outpatient specialty centers for children in six locations, the hospital's Pulmonary and Cystic Fibrosis Center is one of only three pediatric CF programs in Los Angeles County accredited by the Cystic Fibrosis Foundation. Over the years, the hospital's multidisciplinary team of specialists has provided Kellisa with expert medical care, emotional support, nutritional counseling and education.
"CF is a genetic disease involving the buildup of thick, sticky mucus that clogs the lungs and obstructs the pancreas, causing serious respiratory damage and nutritional deficiencies," says Eliezer Nussbaum, M.D., a pediatric pulmonary specialist and the medical director of the center at Miller Children's Hospital, he has been Kellisa's doctor for many years. To counteract the effects of the disease, Kellisa visits the Pulmonary and Cystic Fibrosis Center at Miller Children’s Hospital Long Beach for checkups several times a year.
Additionally, she follows a strict, daily regimen of care recommended by Dr. Nussbaum and the Miller Children’s team. Every morning begins with 30 minutes of therapy using an intrapulmonary percussive ventilator (IPV). The machine delivers bursts of air through a mouthpiece to open Kellisa's airway, expand her lungs, move secretions and deliver aerosolized medications.
Throughout the day, she takes about 35 pills, including antibiotics, anti-inflammatory medications, enzymes, vitamins, mucus thinners and bronchodilators. To provide the additional calories her body needs, she has intravenous feedings six hours every night while sleeping. Periodically, she's hospitalized for "tune ups"—intensive chest physiotherapy, bronchodilators and intravenous antibiotics to treat infections and other problems that develop due to her condition. And she recently had a port-o-cath implanted in her abdomen to make antibiotic IV treatments easier.
"The Pediatric Pulmonary and Cystic Fibrosis Center team has been my rock from day one," says Kellisa's mother, Kathy. "Kellisa's cystic fibrosis nurse, Elaine, knows her medications by heart and has made the whole experience easier."
With the center's help, and the optimistic guidance of her parents, Kellisa has learned to merge aggressive, daily CF treatments with an active school, home and social life. "There's nothing I can't do, including extreme sports," she says. Currently a full-time college student, she's preparing for a career as a social worker and is engaged to be married.
In addition to CF, there are dozens of other serious medical conditions that affect young people. Among them are genetic disorders such as hemophilia, congenital problems such as spina bifida, and acquired conditions such as type 2 diabetes.
"The medical and psychological complexities of dealing with chronic medical problems pose unique challenges for pediatric patients, as well as their families," says gastroenterologist Barry Steinmetz, M.D., medical director of Miller Children’s Outpatient Specialty Centers. 'These illnesses require the kind of highly specialized treatment found only at a major pediatric medical center."