Travel and Cystic Fibrosis

Traveling with cystic fibrosis can be challenging at times. However, CF is manageable with the right preparation and precautions. Although it may seem like a lot more work to travel with CF, putting in the time and effort to prepare can help you have an enjoyable and safe trip. Some considerations to keep in mind while traveling with CF are listed below.

Bring ample medications and make sure they’re stored properly

When packing for your trip, it’s important to remember to bring all medications in their original packaging.^1-3 This allows for ease of passage through security and prevents medication mix-ups or confusion while you’re traveling. If you’re flying with a large amount of medication, more than what might fit within a quart-sized plastic bag, you may need to declare them to a Transportation Security Administration (TSA) officer. If you’re traveling with a large amount of liquid medications, syringes, needles, or other medication-related supplies that might have an issue getting through transportation security, it’s a good idea to travel with a doctor’s note stating your health condition and that you need these supplies while traveling. It’s important to bring a few extra days’ worth of medications, in case your method of transportation gets delayed or canceled.

When traveling with cystic fibrosis, it’s critical to keep all medications on you or in your carry-on luggage at all times.^1-3 Medications should not be checked or stored somewhere other than where you are, to ensure that they don’t get separated from you or get exposed to extreme temperatures. Some medications need to be stored at specific temperatures, especially cooler temperatures. You may need to travel with a portable cooler to ensure that your medications get from point A to point B at the correct storage temperature. When you get to your destination, you may need to store these supplies in a refrigerator or have access to ice in order to keep a cooler cold. You can call your place of stay in advance to see if they have an in-room refrigerator, or if they have a shared refrigerator you can use. If you do store your medications in a shared space, be sure to label them with your name and clear instructions to not remove.

Ensure all devices are charged and appropriate for travel

Similar to medications, it’s important to keep all necessary medical devices near you when traveling, and not check these devices or store them in a place away from you, just in case you get separated from your luggage during travel.^1-3 It’s important to bring all accessories and supplies needed to successfully use your equipment wherever you’re going. If you’re traveling out of the country, it’s important to research whether or not your device and its power source will be usable wherever you’re going. Due to differences in electricity delivery, you may need adaptors, converters, or other supplies. If you do need other supplies, check in with your doctor or healthcare provider to see if they have any suggestions. Although medical devices do not count against your carry-on limit, they may be burdensome to travel with. Your healthcare provider may be able to connect you with smaller, easier to travel with devices to use in the shorter-term.

It’s also necessary to adequately charge all devices before traveling, beyond what you think you might need, in case you find that there’s no place to charge your devices along your route. If you’re unsure whether or not your device will last for as long as you need it to, talk with your healthcare provider to see if there are other potential options. Traveling with a doctor’s note for medical devices is helpful, although not required. The only exception to this is if you are traveling with a portable oxygen concentrator (POC). By law, you are required to tell your airline that you are traveling with a POC when you book your ticket. It’s also helpful to remind them a few days before your flight as well. There are special forms your airline may require when traveling with a POC, which you can find on their website.

Obtain all necessary documentation

Traveling with the appropriate documentation can make a world of difference when it comes to the ease of your travel. Important documents to consider having when you travel include a short health summary from your doctor or healthcare provider that contains a brief history of your situation, medications, allergies, and other important information about your health in case you encounter an emergency or need to see a new provider wherever you are.^1-3 Additional documentation to consider include customs certificates (if you’re traveling internationally with a large amount of medical supplies), medication information or copies of prescriptions, and theme park documentation, if a disability pass or other access pass has been requested. This is not an exhaustive list of all documentation that might be helpful.

Whatever documentation you do get, make copies, including having electronic copies on your phone, tablet or computer. This way, if an official needs to take one of your documentation forms or something gets lost during transit, you always have extra.

Don’t be afraid to ask for assistance

No matter how far you’re going, or what method of transportation you’re taking, it’s never a bad idea to ask for help if you need it. Whether it’s carrying and storing supplies or bags, navigating security, requesting a wheelchair, or receiving a little extra time to board your transit option, asking for assistance is never discouraged. If you are traveling by plane, the Air Carrier Access Act (ACAA) entitles you access to a wheelchair and pre-boarding opportunities if you need them. If you let your airline know that you need support, they should be able to help.

Practice infection-reducing behaviors

Infection is always a risk while traveling with cystic fibrosis, since you’re encountering so many new people, often in small spaces, as well as new foods, drinks, and water sources.^1-3 Practicing good hand washing throughout your travel, carrying wipes to wipe down your seat and surrounding area, wearing a face mask, utilizing air vents to circulate the air inside of an enclosed airplane cabin, and drinking plenty of bottled water can all help reduce your risk of infection. If you are traveling to a new area, especially one outside of the United States, be sure to find out about the food and water supply you will encounter there. You may need to stick to bottled water the entire trip or avoid certain food options if there is a risk of contamination.^1-3

What actions do you take to make traveling with cystic fibrosis easier? Please share in the comments below!

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