5 Tips for Getting Your Best Adult Care for Cystic Fibrosis

You should be the leader of your CF team

If you have cystic fibrosis (CF), you had your fair share of medical treatment — and possibly surgery — as a kid. It helped you survive. And if you were lucky enough to qualify for gene-targeting drugs, they helped you thrive.

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As an adult, how do you ensure you get the same good care you had as a child? Adult Cystic Fibrosis Program Director Elliott Dasenbrook, MD, shares five tips:

1. Seek a smooth transition

Good CF care teams have a formal process for moving you from a pediatric program into an adult program.

“This should involve providing you with a transition timeline and bringing your pediatric providers together with your adult providers to relay your full history and highlight any ongoing concerns,” says Dr. Dasenbrook.

2. Focus on good lung care

A well-rounded adult CF program will focus strongly on your lung health. Your providers should have extensive experience in managing difficult-to-treat infections.

“Look for a program that involves a board-certified pulmonologist,” advises Dr. Dasenbrook. “The major complications most likely to impact your day-to-day life with CF will most likely involve your lungs.”

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3. Partner with your doctor

A good adult CF program puts you, the patient, first. “The leader of your CF team should be you!” Dr. Dasenbrook stresses. “Your physician shouldn’t be a dictator, telling you what to do.”

The doctor should be willing to work in partnership with you, helping you to process the advice you receive and make decisions about which treatments work for your specific case.

4. Get a team on your side

As an adult, you’ll benefit from team care just as you did as a child.

  • A pulmonologist and respiratory therapist can monitor and optimize your lung function.
  • A dietitian can address your overall nutrition status and work toward maintaining your weight.
  • A nurse practitioner can coordinate your care and facilitate communication between all members of the team.
  • A social worker can help you understand insurance options and address the emotional aspects of CF.

“Managing CF is a team sport — a knowledgeable team, working together, will improve the care you receive,” says Dr. Dasenbrook.

5. Look for lung transplant ties

Finally, your CF care team should be closely linked to a strong lung transplant program.

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“At some point, most CF patients need a lung transplant,” Dr. Dasenbrook says. “Transplants for CF are more complicated than those done for other lung conditions, so experience in CF is key.”

You’ll want access to an experienced lung transplant center. Those that do a large volume of lung transplants tend to have better outcomes, he says.

Following these tips will ensure good lifelong care that will optimize your health.

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