Every Breath We Take With Cystic Fibrosis

Life is not measured by the number of breaths we take, but by the moments that take our breath away. –Maya Angelou

For people living with cystic fibrosis (CF), no breath is taken for granted. From the onset of CF, treatment is necessary to survive.

With a timely diagnosis and early intervention, cystic fibrosis patients are enjoying longer and fuller lives.

“The average life expectancy of people living with CF is increasing each year and they now have the opportunity to finish school, begin careers and start families,” said Dr. Marisa Couluris, a Pediatric Pulmonologist at USF Health.

How Does Cystic Fibrosis Take One’s Breath Away?

CF robs a person of the ability to breath freely, and impacts other parts of the body. This disorder is life threatening because it generates a dense sticky mucus that accumulates in the lungs and inhibits the ability to breathe normally.

The pancreas and digestive system are also effected by CF. If the ducts that navigate the digestive enzymes become clogged with mucus that is thick and sticky, the body is then unable to process food, depriving itself of nutrients.

Cystic Fibrosis in the U.S.

CF is a genetic disorder, and is life threatening. In the United States alone there are approximately 30,000 Americans living with CF and 1,000 new cases diagnosed every year. Although it is not widespread, CF is still the most prevalent lung disease found in children and young adults.

Thanks to the advocacy of the Cystic Fibrosis Foundation, every newborn nationwide is now tested for CF. With early detection and treatment CF survivors have a longer life expectancy and a better quality of life.

USF Health is now an affiliate of the Cystic Fibrosis Foundation, and is dedicated to serving the CF community, children and adults alike. Specialized care, management and research are provided to help each patient reach their full potential and live their best life.

“This is a very exciting time for cystic fibrosis research as we not only have studies focusing on symptom relief but also treating the underlying cause of CF,” Dr. Couluris said.

Can I lead an Optimistic and Full Life with Cystic Fibrosis?

Cystic Fibrosis is a progressive disease, so the sooner it is diagnosed and treated the better the outcome.

Not too long ago a child born with CF did not live to see high school. It is now possible for a person living with CF to look toward to the future. Early intervention is key.

Keeping the lungs free from infection can be challenging, sticking to a strict nutritional routine is of the essence to maintaining strength and warding off lung infections.

Treatments for CF range from:

• Antibiotics
• Inhaled medications
• Performing airway clearance techniques (to loosen and get rid of mucus in the lungs)
• Exercise for increased respiratory and muscle endurance, and increased ability to expectorate
• Practicing cleanliness – avid hand washing and staying vigilant regarding germs on shared surfaces

A lung transplant may become necessary for those who develop acute lung disease. At USF Health we take the multidisciplinary approach and partner with Tampa General Hospital and the Lung Transplant team.

“There have been over 500 lung transplants performed at TGH and people with CF are living longer after lung transplant thanks to research,” Dr. Couluris said.

USF Health Pediatric Pulmonology is now one of the 120 accredited cystic fibrosis care centers across the U.S. USF Health has cared for children with CF for more than 20 years. We are a multidisciplinary center of providers, nurses, social workers, dieticians, and respiratory therapists all specializing in caring for children with cystic fibrosis

For an appointment at USF Health Pediatric Pulmonology call 813 259-8700

 

Written by Ercilia Colón

USF Health Making Life Better