Spring

Life with Cystic Fibrosis

Parents, Patients Participate Actively in CF Care

The Cooks have lived with cystic fibrosis since 1996, when all three boys were diagnosed with the disease.

As the medical staff of Cincinnati Children's Hospital Medical Center recently worked to redesign the care program at the Cystic Fibrosis Center, they knew they wanted to involve patients and their families. So they invited them to join professionals in a group called the Pursuing Perfection Team. This focus on family is woven through all levels of planning and care at the center.


"In any chronic illness, clinical evidence supports the belief that the best outcomes are reached when the patient and family are well-versed and active in their care," says James Acton, MD, director of the Cystic Fibrosis Center at Cincinnati Children's.


In the past, the care team – physicians, nurses, respiratory therapists, nutritionists – would have made all the decisions and then communicated them to the patient. At the CF center, the health care team share data with patients and family, then give them options.


"Together we make decisions," he says. "If patients and their families help design the care plan, they'll adhere to the decisions better. We
tell patients, 'It's your care, we participate at your invitation.'"

Scotty Cook took his cystic fibrosis (CF) therapy vest to school for show and tell. Matthew Cook wrote a fourth grade essay titled, "This is the Story of My CF Life." Joshua Cook wakes up at 5:30 to do a half-hour breathing treatment for his CF before catching the school bus.

The Cooks have lived with cystic fibrosis since 1996, when all three boys were diagnosed with the disease. Parents Bob and Kimberly hadn't heard of CF before. Now, Kimberly says, "It's become part of our daily routine." Every day, Joshua, 14, Matthew, 11, and Scotty, 9, undergo at least two 30-minute breathing treatments, and take a handful of medications each.

A Determined Family

Home therapy is critical for kids with CF, involving a lot of time and effort. Kimberly gathers strength from her love for her kids. She also attributes her family's endurance to the support they receive at Cincinnati Children's Hospital Medical Center. Home care tips Kimberly finds helpful include:

  • Filling pill cases for the boys each week, so she can see at a glance who has taken his medications 
  • Enjoying one-on-one time with her sons during the breathing treatments, when she can talk or read with them 
  • Keeping the boys distracted during breathing treatments, with board, video and homemade games, so they aren't focused on the treatment itself 
  • Challenging the norm and being involved in advancing medicine through opportunities at Cincinnati Children's, such as participating on committees to provide input from a parent's perspective

Most important, Kimberly says, is teaching her kids how to care for themselves. "We make sure we're doing everything we can for them now, so they can be adults with CF."

Life with cystic fibrosis requires commitment from several people, including health care workers, school personnel and family. Matthew said it best in his essay: "It takes a lot of teamwork living with CF."