Taking CF Care on the Road

Planning your next adventure can be as exciting as it is nerve-racking. Traveling with cystic fibrosis (CF) can present several challenges, including packing the right things and finding destinations with adequate healthcare access.

Below are some tips to consider as you prepare for both overnight and month-long trips while living with CF: What to Pack | How Much to Pack | Packing When Flying | Information to Bring | Miscellaneous Items to Pack

What medication and equipment should you or your loved one pack?

Make a list of all the oral and inhaled medications you will need. Don’t forget the cords, counterparts and any adapters you will need for the country you’re visiting. When packing your medication, keep it in the original container with clear labels showing your name and the drug name. In addition, keep daily doses of any enzymes, supplements, and vitamins you take sorted in labeled resealable bags or a pill organizer.

How much medication should you or your loved one pack?

Depending on your destination and how long you'll be staying, it’s a good rule of thumb to pack at least an extra 3 days’ worth of medication. If your medication needs to be refilled while you're away, contact your insurance company and request an override so it can be refilled early. Your doctor may be able to also write you a prescription to take with you just in case.

How to pack your or your loved one’s medication and equipment when flying

If you’re flying, make sure all your medication and equipment is easily accessible in a carry-on or personal bag. You don’t need to check your medicine and equipment. When going through airport security, you may want to inform the staff in advance if you have liquid medications and a nebulizer in your carry-on. Your CF care team can further support you by providing a letter on official letterhead, listing all your required medications and dosages, which you can keep in your carry-on. You can also use a travel cooler with frozen packs for medications that require cooling, and pack everything in a compact and orderly fashion.

What health information should you consider bringing with you?

Bringing a digital or printed copy of a document that outlines your personal health information can ensure you have quick access to important details when needed. Key information to document includes:

Name and date of birth
A short description of CF and your health status
Any known allergies
A list of medications, including the generic drug name, dosage, and frequency
Any other daily therapies
Indicate whether you have a portacath in situ
Details of usual antibiotic combinations used for exacerbations
List of emergency contacts, including names, relation to you, and contact number