Travel Tips for Idiopathic Pulmonary Fibrosis

Once you get the all clear for your trip, experts recommend including the following in your IPF travel kit:

Medications and Breathing Equipment

Pack all prescription medications and any breathing equipment you use at home, such as inhalers or a nebulizer machine, says Priscilla Grace Tiglao Yee, DO, a pulmonary and critical care physician with UM Baltimore Washington Medical Center with offices in Glen Burnie and Laurel, Maryland.

Portable Oxygen Equipment and Accessories

Be sure to confirm that your portable oxygen concentrator has at least 150 percent of the battery life needed for your travel time to account for possible delays, says Rami Abboud, MD, a pulmonary, critical care, and sleep medicine specialist at Mercy Health in Lorain, Ohio. Don’t forget the cords, adapters, and backup battery packs.

Dr. Abboud also suggests packing a pulse oximeter to monitor your oxygen levels and taking advantage of early boarding if available, so you have extra time to get properly situated before departure.

“Travelers should make sure they will have enough oxygen for the trip and at their destination, which will require calculating supply needs in advance or arranging for oxygen to be available upon arrival,” Hajari Case says.

Medical Records and Key Contacts

Yee recommends bringing copies of your medication list and recent medical notes.

Keep key contact information handy as well, says Hajari Case, including your insurance provider, your physicians at home, and any family members who should be reached in an emergency.

Masks and Hand Sanitizer

Other Items

Also consider packing the following items, according to our experts:

• A pill organizer
• A reusable water bottle
• A continuous positive airway pressure (CPAP) machine, if you use one at home
• A travel pillow
• A white noise machine, if that’s part of your usual sleep routine
• Your doctor’s letter explaining your devices and medications

New time zones and packed itineraries can get in the way of your medication schedule. Here’s how to stay on track:

• Carry a doctor’s letter or a Transportation Security Administration (TSA) notification card. If you’re traveling with oxygen, a nebulizer, or multiple medications, a doctor’s note can help explain your needs during security screening.

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  You can also download a TSA notification card to inform agents of your medical devices.
• Label your pill organizer with days and times. For longer trips, this takes the guesswork out of which medications you’ve already taken and when, says Hajari Case.
• Set alarms and keep medications visible. Yee recommends using alarms on your phone or watch as reminders. Keeping your medications somewhere you can see them also serves as a visual cue, she adds. But follow storage instructions, since some medications need to stay in their original containers and be protected from heat, humidity, or light.

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• Adjust timing gradually for time zone changes. If you’re crossing time zones, you may need to gradually shift the timing of your medications over a few days, says Yee. Certain IPF medications need to be taken on a strict schedule, so check with your care team ahead of time about making adjustments.

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Try these tips to help you get better rest on your trip:

• Recreate the sleep habits that work at home. That may mean using oxygen or a CPAP machine, keeping the room dark and cool, elevating your head with extra pillows, or using white noise if that’s part of your routine, says Hajari Case.
• Stick to a consistent sleep schedule. Try to sleep and wake at the same time each day.

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   Yee suggests keeping naps under 30 minutes and avoiding napping too close to bedtime.
• Add buffer days. Plan at least one low-activity day on arrival before jumping into excursions, says Abboud, and give yourself a day or two to recover from travel. Take breaks often and listen to your body throughout the trip.

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• Prepare for the unexpected. Research mobility accommodations in advance, arrange wheelchair assistance, and identify medical facilities near your destination in case of an exacerbation.

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• Travel with a trusted companion. If possible, bring a travel companion familiar with your medical history who can help in an emergency. Be aware of your limits, and avoid pushing yourself too much.

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• Start small. If you’re new to traveling with IPF, consider starting with a short, local trip to build your confidence.
• Talk to others. Consider connecting with others with IPF who have traveled for helpful tips and reassurance.

There are ways to manage nutrition and hydration while you’re away:

• Plan meals around your medications. Some antifibrotic medications used for IPF must be taken with food, so plan to have a meal or snack available when it’s time, Hajari Case says.

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• Eat smaller, balanced meals. Large meals can increase pressure on the diaphragm (the main muscle used to breathe) and worsen breathlessness.

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  Abboud recommends having small, more frequent meals throughout the day.
• Be mindful of trigger foods. Travel often means trying new foods, but be mindful of anything that can trigger symptoms, such as spicy or acidic foods if you’re prone to acid reflux, Yee suggests. You may also want to avoid foods such as tomatoes, coffee, and chocolate if they worsen symptoms of gastroesophageal reflux disease.

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• Watch your salt intake. High-sodium foods can lead to fluid retention and make breathing more difficult, Abboud says.

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   When eating out, ask for sauces and dressings on the side, and request that your meal be prepared with less salt.

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Hopefully you won’t need it, but an emergency care plan is just as important as packing your travel kit. Here are a few ways to be prepared:

• Look into travel insurance. For longer or international trips, travel insurance can be helpful if you need to cancel, cut your trip short, or access medical care while abroad.

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   A policy that covers preexisting conditions is worth considering, says Abboud.
• Understand your medical care options at your destination. Research what medical services are available near where you’ll be staying, Hajari Case suggests, and know what your insurance covers abroad.
• Wear a medical identification. A medical alert bracelet or similar ID that notes your IPF diagnosis and oxygen use can be important in an emergency, Abboud says.

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   Services like MedicAlert Foundation can link your bracelet to a 24/7 hotline so responders can access your health information if needed.

• Traveling with idiopathic pulmonary fibrosis is possible with some planning. Talk with your pulmonologist before your trip to make sure it’s safe, ensure that your vaccinations are current, and plan for oxygen, medications, and any needed documentation.
• Keep all medications and breathing equipment in your carry-on, and pack a travel kit with enough supplies, extra batteries, a pulse oximeter, and copies of your medical records.
• Set alarms to manage your medication schedule, get enough rest, pace your activities, build in time to recover during your trip, and be mindful of nutrition and hydration.
• Have a plan for emergency care before you leave, including travel insurance, knowing where to get medical care, and wearing medical identification that states your diagnosis and oxygen requirements.