May is Cystic Fibrosis Awareness Month

(From left) Driscoll Children’s Hospital Cystic Fibrosis Center Coordinator Natasha Busch, CF patient Madison Gonzalez, 3, and Driscoll Children’s Hospital CF Center Director Jon Roberts, MD.
In a traditional clinic setting, patients typically sit in the same room while waiting for their name to be called. For patients with cystic fibrosis (CF), it’s not that simple.

Cystic fibrosis is a genetic disease that causes a buildup of thick, sticky mucus in a patient’s lungs. It causes ongoing lung infections and progressive lung damage. CF also affects other parts of the body, including the pancreas, and can make it difficult to absorb nutrients from food and maintain a healthy weight. More than 30,000 people in the United States have cystic fibrosis.

To avoid cross-infection, guidelines suggest that people with CF maintain a distance of six feet between each other because germs can spread as far as six feet when someone coughs or sneezes.

“With CF, you don’t want patients sharing bacteria that could be multi-resistant. We stagger appointments to avoid having multiple patients in the waiting room at the same time, and we provide masks to patients and staff,” said Jon Roberts, MD, Driscoll Children’s Hospital Cystic Fibrosis Center Director.

A team of physicians, nurses, respiratory therapists, physical therapists, pharmacists, nutritionists and social workers operate as a well-oiled machine to protect CF patients’ health and safety. The team meets weekly to discuss the patients coming into the clinic, to look over appointment times and confirm that there is enough time in between patients, and to make a plan for each patient.

If a patient becomes hospitalized, they are placed under a “purple precaution” – or reverse isolation.

“There are times where we may have two CF patients hospitalized at the same time. If that happens, we just have good communication and we make sure that they don’t cross paths. Patients are put in separate halls and they try to have different nurses to prevent exposure to other CF bugs,” said Natasha Busch, RN, Driscoll Children’s Hospital Cystic Fibrosis Center Coordinator.

Social Worker Jessica Rombs says that CF, unlike other chronic illnesses where you want the patients to get together and bond, can be very isolating. She uses technology to connect CF patients and their parents to others living with or caring for those with the same illness.

As the only Cystic Fibrosis Foundation-accredited center in South Texas, the hospital has access to tools, resources and guidelines, which are implemented and accessible to the inpatient and outpatient staff. Driscoll’s Cystic Fibrosis Center provides care to patients in the Coastal Bend, Rio Grande Valley, and Laredo.

“This fulfills a big need for our region of the state,” said Rombs. “It’s important for the CF patients from all parts of South Texas to have regular evaluations, and our accreditation allows them to have those visits here at Driscoll.”

For more information on Driscoll’s Cystic Fibrosis Center, visit www.driscollchildrens.org/specialty/cystic-fibrosis-center