The Fears an IPF Patient Faces when Going on Vacation

The Fears an IPF Patient Faces when Going on Vacation

younger than 30

When most of us think about going on vacation, images of relaxation pop into our minds. The point of a vacation is to feel rejuvenated and to catch a break from our structured and routine-filled days of school, work, appointments, or errands.

Planning a vacation should be fun and filled with the excitement of a trip or even the anticipation of some unstructured, free time to catch up on unintentionally neglected things. However, planning a trip for patients with idiopathic pulmonary fibrosis (IPF) can be stressful. Patients must take many things into consideration before going on vacation, and sometimes these things can interfere with the excitement of an upcoming trip. Unfortunately, this is the case while I plan a cross-country weekend vacation to Vancouver.

While my excitement of visiting Canada’s western coast certainly exceeds the worries, I still have several fears about flying with supplemental oxygen. I have flown several times since my IPF diagnosis in early 2016, both internationally and domestically. I visited Australia shortly after my diagnosis, New York City this past fall, and most recently, California for a conference. For these trips, I had to take supplemental oxygen with me, though it was only on the latter two flights that I needed to use it while airborne. Funnily enough, traveling with supplemental oxygen to international destinations has been easier than during domestic travel.

Aside from all the paperwork that must be completed for a patient with a chronic illness to fly, especially if bringing along supplemental oxygen, many other concerns come to mind. Some can be anticipated and planned for to reduce potential risks, but unforeseen situations could arise.

Following are some of the fears I have as my trip draws closer:

Running out of supplemental oxygen

Thankfully, for this upcoming trip, I can travel with my portable oxygen concentrator (POC) instead of cylinders. I’ve purchased enough extra batteries to last double the duration of the flight and have had my POC thoroughly inspected by my oxygen provider. I am also bringing a car charger for the POC batteries to ensure I always have access to my oxygen. The altitude in Vancouver is different, and so my lungs may react abnormally, especially since I plan to take a gondola up to the peaks of Whistler Blackcomb. I have a crippling fear that despite all my preparations, I could somehow run out of oxygen.

Persistent fatigue

Traveling sparks a lot of excitement, as there aren’t many things I enjoy more than traveling to different parts of the world. Because of that adrenaline, I don’t often experience fatigue while overseas or at a tourist destination. However, since I developed IPF, I’ve suffered from fatigue a lot more frequently, and I fear that once I return from Vancouver, I will crash physically, emotionally, and mentally. If returning home with a few days to rest, this would be fine. However, I plan to return to work the next day, likely with persistent fatigue that hinders my productivity.

Pain

IPF causes me to experience pain on a regular basis. This can include muscle, joint, and nerve pain among other things. Plane travel can bring pain and discomfort for anyone, but the tightness in the chest of an IPF patient can be excruciating when flying. I also plan to fill my schedule in Vancouver to optimize time there and see as much as I can. I fear that long days on my feet will cause extreme pain.

Germ exposure and illness

Infection risk is inevitable on an airplane! I will do my best to take precautions, such as wearing my Vogmask and washing my hands as frequently as possible. However, the risk of falling ill while traveling is never completely eliminated. I am hopeful that if I catch a virus while on this trip, it will not manifest into anything serious, especially while I am not surrounded by my regular medical teams.

IPF patients: Do you have any particular fears about traveling or flying while using supplemental oxygen?

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

7 comments

  1. robert o'brien says:

    My problem is more getting from security to the gate so I have to hop on one of those “golf” type carts. How do you get to the gate?

    • Charlene Marshall says:

      Hi Robert,

      This is a really good question! I hope this means that, despite needing assistance, you are still able to fly with your PF/IPF?

      Depending on how far the gate is from the security check point, sometimes I walk but most of the time I either have someone push me or I get a ride on the mobility assistance carts. Usually at the airport when the airline personnel spot me wearing oxygen, they are quick to help me with mobility, ie. carrying my bags, ushering me to the priority line so I don’t have to wait etc. This was hard for me to accept at first but I’ve learned over the years that fighting it and using my energy to walk to the gate and/or carry my luggage just hurts my ability to be energized at my final trip destination. As a result, I don’t fight it as much now and accept the help.

      Thanks for reading my columns Robert, and best wishes to you!
      Charlene.

    • Terry Moriarty says:

      Hi Robert,
      I arrange for a wheelchair from arrival at the concourse to boarding the plane. This is particularly important if the plane doesn’t have a jetway. I know it can be embarrassing to be pushed through the airport, but having a stress-free trip is more important.
      When you notify the airline that you are traveling with oxygen, you can let them know that you need wheelchair assistance. You have to add time to your travel time because some airports are really slow at getting the wheelchair to you.

      • Charlene Marshall says:

        Thanks again for this wonderful tip and post Terry. I agree re: adding time to your travel when requesting assistance as oftentimes this isn’t a priority for people, even though this isn’t usually their intention. Allowing for excess time keeps the whole experience a lot more stress-free. I call in advance for a wheelchair if I need it, or usually the airline asks me if I need assistance as soon as I disclose that I’ll be bringing oxygen along.

        I hope these experiences help you feel a bit better Robert.
        Warm regards,
        Charlene.

  2. Terry Moriarty says:

    Hi Charlene,
    Great article of things to think about going on vacation. I have a couple other things to add.
    1. Pack extra cannulas and a long extension tube with a swivel joiner. I put one cannula in my purse, just in case the one I’m using breaks. I’ve only had this happen once and thank goodness I was at a hospital, so could get another one easily. But it’s good to be prepared.
    The longer tubing I use in the hotel room to be able to move around easily without dragging the POC around the room.
    2. When staying longer in one place, I notify my oxygen equipment provider well in advance. They will have a concentrator delivered to where you are staying. I know this happens in the US. don’t know about internationally.
    3. If going on a cruise, there is a company that will deliver a concentrator to your room. This is at an additional fee, but I found it well worth the expense.

    • Charlene Marshall says:

      Hi Terry,

      Thanks for reading my column and contributing these tips – they are all great ideas!

      I am going to start carrying around an extra cannula as well. I usually keep one in the pouch that comes with my POC, although sometimes when I don’t have it nearby or leave the pouch in the car, I could be in trouble if my cannula broke. If one is in my purse, I usually always have that with me. Great tip!

      Regarding your oxygen service provider, does your Doctor just direct you to the same provider in the city you’re staying at during your vacation? I’ve done this a couple of times. My doctor just gives my script to the oxygen service provider wherever I am, and I have issues with my POC, I can go there for a new one. Usually I bring mine along, but I like knowing I have a repair option wherever I’m staying if I need one.

      Thanks again for sharing – these are all really great tips to add.
      Hope you’re having a nice day.

      Warm regards,
      Charlene.

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