In-depth Resource Information
If you or a loved one is diagnosed with an Interstitial Lung Disease, you may be overwhelmed with new information related to all of the testing and new treatments that might be prescribed.
You may have many unanswered questions about how this will affect your life, what to expect for the future, and how to deal with the symptoms of your lung problem or side effects of medications and other treatments. It is critical to have access to accurate information and support. There are many resources available to you and your family that provide accurate and supportive information.
Starting on oxygen therapy is a significant change for most patients with ILD. Understanding how your physician determined that you need oxygen, why it is needed, and what the various equipment options are available to you, will make the transition somewhat easier. Talking with other patients is also extremely helpful, either at your Pulmonary Rehabilitation program, or at a support group. Also, during your ILD clinic visits you may see other patients with various types of oxygen equipment and it is always good to get useful tips from other supplemental oxygen users. There are many resources available to learn about oxygen - written materials, podcasts, copies of lecture slides, etc...that are including in the following sections.
Air Travel with Oxygen
The only type of portable oxygen that is allowed on airplanes is a portable oxygen concentrator (POC). Most POCs are FDA-approved for air flight but it is critical that you check with the airlines that you will be using to ask them about their POC requirements. Some POCs may be stamped with an 'FAA approval' notation but it may not mean that every airlines allows them. However, there are important points to consider when you are a supplemental oxygen user and planning to travel by air.
- First, check with your physician to make sure it is safe for you to fly with your lung condition. This is particularly important if you have recently been sick, undergone any procedures, or also have heart problems.
- Traveling by air simulates high altitude because oxygen concentrations in the plane's cabin are lower compared to those at sea level. The airline cabins are pressurized to about 8,000 feet above sea level and for some ILD patients this may significantly decrease oxygen saturations.
- If you don't need oxygen normally, but are borderline, you can have a "High Altitude Simulation Test" to see what your oxygen levels are at altitude. This test is done by having you breathe in a mixture of oxygen that is 17% oxygen instead of the normal 21% oxygen. Your physician will review the results and advise you if you will need oxygen during the flight, and how much. This test is typically not offered at every pulmonary function lab.
- If you already use oxygen at sea level, you will likely require a higher setting during your flight. Talk to your physician to confirm what setting that they recommend you to use.
- Check the airline's website at least one month before you travel to determine if they require an MD letter documenting that you are physically able to use a POC during flight, what setting, and that you will have enough battery power for the flight. (Most airlines require that you have 1 1/2 times the hours of the flight in terms of hours of oxygen supply. You should take a few copies of this letter with you.
- IMPORTANT: Recently (since early 2025) some airlines have not allowed 'double batteries' as they state that these two 90 Watt hour batteries exceed the FAA 100 Watt hour limit (they are adding two 90 Watt hour batteries to equal 180 Watt hours). This has varied between airlines but some are now only allowing single batteries to be used. Again, please call your airlines to confirm their current policy. Advocacy efforts are being made to allow double batteries but published policy has not yet changed.
- Notify your physician at least one month before you travel so that they can have the required documentation ready for you.
- Check with your DME if you do not currently use a POC and see if they can rent you one for your trip. If they can't, there are other sources that specialize in traveling with oxygen. Make sure you have extra batteries. Unfortunately most payors do not cover oxygen rentals for travel.
- Unfortunately you can not assume that you will be able to plug your POC into an electrical outlet on the plane, even if they state that they have electrical outlets. Sometimes these are not functioning, or areas in the plane rotate during flight as to when power is available, or you may be instructed by the airlines that you will not be allowed to use the outlet for your POC.
- When you arrive at the airport, plug in while waiting for your flight so that you can save your battery for the flight.
- In addition to arranging for a POC during your flight, if you use oxygen with sleep or 24 hrs/day you will need to make arrangements for a stationary concentrator to be delivered to you destination.
“Our patients have so much more on their plate than just cough and shortness of breath. Dealing with health issues also brings life issues – work, insurance, finances, coping, mental health, family dynamics, and resource challenges to name a few. My role is to help people figure out how to make life work with their new normal.
- Kate Yablonsky, LCSW