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The View From the Inside: Your CF health care team
Brenda Urbanczyk, the program manager of the CF clinic at Children's Medical Center in Dallas, has witnessed first-hand the exciting advances made in the treatment of cystic fibrosis over the last 15 years.
Those advances have been reflected in the faces of the young children – many now adults – who spend their childhood supported by the caring CF health care team at the Texas clinic. Urbanczyk and her staff become so entwined in their patient's lives, they even have “Girls Night Out” to attend plays, recitals and other performances by their pediatric patients.
“I think it reinforces for them that, 'Hey, they are here for us, and they are trying to help us,'” says Urbanczyk.
The Dallas CF clinic is one of 115 CF care centers nationwide accredited by the Cystic Fibrosis Foundation (CFF). The accreditation process is part of an ongoing CFF program to ensure standardized care for people living with CF. In order to maintain their accreditation status with the CFF, clinics undergo yearly reviews. They also participate in CF clinical research, and help educate health care providers about the specific needs of children and adults living with cystic fibrosis.3
The shifting CF population – about 47 percent of the patients nationwide are now adults – highlights the reason why transition and adult clinics have become a big part of the CF conversation. Urbanczyk says that the Dallas clinic transition process seems to work very well for their patients.
When Dallas CF patients reach adulthood, they move to the adult clinic, which incorporates the same multi-disciplinary team approach used in the pediatric clinic. It's a move that seems to make the transition easier for many patients. They change pulmonologists, but keep the nurses that some have known for years.
“We've had patients that came when they were a year, or 2 years old,” says Urbanczyk. “Now they're married and having children. For us, that's such a reward to see.”
Urbanczyk believes that the ideal place for a young adult with CF is in the hands of a team of health care providers who understand the specific needs of people living with the disease.
“Transition is very difficult because since you've been diagnosed, you've been with this center and you entrust the center to take care of you,” says Urbanczyk. “Your team knows the disease process and they know what meds you're on; and, it's been years sometimes.”
The Dallas CF clinic at Children's opened in the early 1970s and now serves more than 400 cystic fibrosis patients. Urbanczyk says that what used to be a 20/80 split between pediatric and adult patients is now nearly 50/50. More adults means better treatments are extending lives.
“Just this last year we had a patient that passed away who was 67 or 68,” she smiles. “Our patients are growing up and they're becoming adults and they living their lives. That's what it's all about.”
- 3Cystic Fibrosis Foundation, (2008). Care Center Network page. Retrieved June 2, 2008 from http://www.cff.org/LivingWithCF/CareCenterNetwork/.
