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Tips for traveling with pulmonary hypertension.

It may feel overwhelming to travel when you have pulmonary arterial hypertension (PAH). There will always be things you can’t control like long lines, the weather, travel delays or crowds. Your daily routine might look and feel different.

  • People who don’t need oxygen at home might need it when they fly or travel to higher altitudes.
  • Your doctor may want to do an oxygen stress test to see how your body will respond to being on a plane or at altitude.
  • Taking your medications can be complicated. Some medications need cool storage, extra supplies, or a pump or inhaler.

But the challenges don’t have to stop you. Planning ahead can make a difference. Here are some tips that can help make your trip as smooth and stress-free as possible.  

Talk to your health care team.

The first thing you need to do is talk to your doctor or health care team to make sure it is safe for you to travel. They will tell you if there are special things you need or to do differently. Your doctor or health care team needs to know:

  • How you will be traveling (like by car, bus, train, ship or plane) and how long it will take to get there.
  • How long you will be gone.
  • The altitude of the place you are going.

Ask for:

  • An original, handwritten copy of your prescriptions (medication and oxygen).
  • A letter from your doctor that says you can travel and lists any specific needs.
  • If you are on oxygen, make sure the letter says that you know how to use the oxygen on your own and what to do if an alarm or warning goes off.

General tips.

  • Plan for extra time to get through security.
  • Have extra medications and supplies easily available (like in your carry-on bags).
  • Take at least an extra week of medications and supplies.
  • Plan for delays.
  • Take telephone numbers and email addresses of your health care team with you.
  • Wear a medical ID bracelet or something like that to show that you have PAH.
  • Take your specialty pharmacy phone number with you. You may need to call them if you have problems with your medications or devices or will need to arrange a refill while traveling. The CVS Specialty PAH CareTeam phone number is 1-877-272-2738.
  • Plan your activities:
    • Make sure you have enough oxygen to last through each activity.
    • If you’re using a portable oxygen concentrator, always have extra, charged batteries with you.
    • Consider using a fold-up stroller to push your oxygen and supplies if a backpack gets too heavy.
  • Don’t be afraid to ask for a wheelchair or pre-boarding. They will help you save energy and make it easier to get through crowds.
  • If you are riding a bus or train, sit where you can get up and walk around more easily. Stop often to stretch your legs if you are in a car. If you are flying, pick an aisle seat.
  • Talk to your health care team about wearing compression stockings. They can help with swelling and discomfort, especially when you are at high altitudes.
  • Talk to your health care team about healthy eating while you travel and limiting how much salt you eat. Always have a healthy snack or two handy.
  • Bring a pulse oximeter with you so you can test your oxygen level when needed.
  • Rest when you need to.

Also, make sure to plan for an emergency during the trip or when you get to where you were going. Think about things like:

Tips for ground travel.

  • Carry your medications, supplies and paperwork where you can find them easily, like in a backpack, purse or briefcase.
  • Stop along the way if you are driving to stretch your legs. Stand up and stretch your legs if you are going by train or bus. Getting up and moving around at least every two hours can help lower the risk of getting a blood clot.

Tips for air travel.

You can’t bring oxygen canisters onto a plane, but you can bring a portable oxygen concentrator (POC). The POC has to be approved by the Federal Aviation Administration (FAA). Check to see if there is a label on your POC that says it is FAA-approved. If it doesn’t have a label, you can check at www.faa.gov/about/initiatives/cabin_safety/portable_oxygen or call 1-866-835-5322.

  • Call the airline to find out what their rules are for traveling with oxygen or using a POC.
    • Talk to your doctor about how many liters of flow you will need. Double check with the airline that you can use that flow on the plane.
    • Find out if you have to use the airline’s oxygen supplier or if you should make your own arrangements.
    • Some airlines let you rent or buy a POC for travel. Make sure it is FAA-approved.
  • Always pack your medication and supplies in your carry-on luggage. It doesn’t happen often, but checked bags are more likely to get lost.
  • Get a non-stop flight if you can. If you can’t, schedule as few connections as possible.
  • Check with your insurance company to see if they will cover the cost of extra oxygen.
  • Always bring extra batteries. Spare lithium batteries need to be in their original packaging and go in your carry-on. If you don’t have the original packaging, tape the battery terminals or put them in separate plastic bags.
  • Pack your continuous positive airway pressure (CPAP) machine in your carry-on bag. Remember, you can only bring 3 ounces of distilled water (or any liquid) with you on the plane. You can have more in your checked bags.
  • Check with your airlines and transportation company to see if your medications need to be labeled in their original containers, and how to travel with your batteries and liquid. 

For more information.

Visit the Transportation Security Administration (TSA) at https://www.tsa.gov/travel/special-procedures

Visit TSA Cares at https://www.tsa.gov/contact-center/form/cares

Call 1-855-787-2227

 

Tips for traveling by ship.

  • Call the cruise line to learn what their requirements are and what medical forms you need for traveling with oxygen.
  • Carry your medications, supplies and paperwork where you can find them easily, like in a backpack, purse or briefcase.
  • Ask the cruise line if they supply the oxygen or you need to make arrangements for oxygen yourself. If you need to make your own arrangements, call your oxygen supplier. Let them know:
    • The name of the cruise line
    • The port you are leaving from
    • How long you will be gone
    • Make sure your oxygen supplier will give you:
      • A nighttime home concentrator for your cabin
      • A POC (or enough tanks to last the entire cruise, round-trip).
  • Bring a copy of your oxygen prescription and a medical release from your doctor.
  • Get to your departure point early. It can take extra time to get through security.
  • Find places around the ship where you can plug in your POC.
  • Bring extra batteries and keep enough batteries charged so you can participate in activities aboard the ship or on shore excursions.

 

You can also download our brochure on tips for traveling with PAH for a checklist to use when planning for an upcoming trip.

Wishing you smooth travels. Know that you can call your CVS Specialty CareTeam at 1-877-242-2738 if you have questions.

 

For more travel resources, visit:

Transportation Security Administration (TSA)

 

PH Association Travel Resources

 

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