Flash Back Friday – Traveling With Sarcoidosis

Originally posted JANUARY 3, 2011

121The last time I traveled by plane I flew from NY to Phoenix via Chicago. It was the first time I flew since having my surgeries and I was not fully prepared. Having sarcoidosis of the lungs and heart and heart failure with an implanted defibrillator does have its challenges on a daily basis, and I thought it would be even more challenging to travel by air. I was right and I was wrong. When you have an implantable defibrillator sitting in your chest, there are lots you should not do. Going through the airport security metal detector or letting the security personnel scan you with their wand is one of those things. I carry a little blue card from Medtronic, the manufacturer of my defibrillator that let’s airport security know that I need to be patted down instead. I guess they do that to everyone now.

My experience was fine. They were always polite and very respectful. They took my stuff off the scanner belt and brought it over to me. It was like getting special treatment. That was the part I was most worried about, that I would get some jackass that insisted I had to be scanned and would set off my defibrillator. But that all went smoothly.

However, flying from NY to Chicago was a bit scary. That part I did not consider or prepare for. The flight is about two hours long and about 45 mins into it I started to feel my lungs tighten up. It got harder and harder to breathe. I was trying to decide if to call a flight attendant, but I was flying American Airlines, and they have the most unpleasant flight staff in the air. I figured they might just open a door, toss me out and shout “Can you breathe now asshole!?” as I plummeted 30,000 feet to the earth below.

I decided to do some relaxation breathing exercises and see if that help. It didn’t. So I reclined my seat, closed my eyes and decided to nap. Either I was tired or I had a lack of oxygen and passed out, but the next thing I knew was that I heard the pilot announce we were going into Chicago, and I could breathe better. The flight from Chicago to Phoenix was fine. I was only slightly short of breath.

I am on oxygen therapy, and I didn’t know this before, but people on oxygen therapy can request oxygen for the flight. The draw back is that it costs $175.00 for every leg of your flight. That means for that trip to Phoenix, it would cost me $700.00 just for oxygen.

Now a company has come out with battery operated portable oxygen concentrators that have been approved for use on airplanes. They are a bit cumbersome, and they are cost prohibitive. They cost around US $2,000.00.

I don’t have any plans to travel in the immediate future, but if I do, I definitely do not want that experience of feeling like I can’t breathe again, nor do I want to put out an extra $175.00 for every leg of a trip. Spending $2,000.00 for the convenience of the concentrator also makes no sense.
As of now, my oxygen supplier does not have the portable concentrator for rent nor do they know if it will be approved by insurance companies to be cost covered for travel.

I guess I’ll just drive …

3 Comments Add yours

  1. Jackie says:

    How scary to have not been able to breathe! Good news: You can rent the concentrators and insurance should pay for it! That is what I had to do because Southwest doesn’t offer their precious oxygen to passengers, even at a cost. It’s a bit annoying to bring along because you have the machine plus you need enough batteries for 2.5-3 times the length of the flight. (May vary by airline.)


    1. Basil Rene says:

      I checked and my insurance won’t pay for the rental equipment. Go figure.


      1. Jackie says:

        Jerks. 😠


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