Surviving Without Air!

I recently took a vacation and I decided at the last minute not to travel with my supplemental oxygen. What? Are you crazy man? Yep, you read that correctly. I decided to hop on a plane for a 7.5 hour trip with supplemental oxygen.

If you are here for the first time, just a quick history of why that sounds so crazy. I have sarcoidosis of the lungs and heart, heart failure, a semi paralyzed diaphragm (that still functions properly – doctors baffled), an implanted defibrillator and I am supposed to use oxygen with activity and sleep.

Well, I do use it with sleep, but I am not so good at using it with activity other than exercise. I am blessed in that I am able to afford my own portable oxygen concentrator, one of the smallest in the world, and lightest, but for me it is just a pain in the ass and it gets in my way most of the time. Plus I am a professional chef, so I definitely cannot use it at work in the kitchen. “BOOM!” Anyone?

When I travel, and I have seen the inside of JFK for seven different trips in the past year, I always take it with me. But more and more I found that I didn’t need to use it on the plane and found myself only using it for sleep when I got to wherever I was flying to. This last trip, a vacation thank goodness, was to The Netherlands, a 7.5 hour trip from JFK. The trip back was through Atlanta which entailed 9.5 hours to Atlanta, the a connecting flight to JFK.

Federal law requires that you register your oxygen concentrator with the airline if you are going to use it on board, that you have a letter from the doctor, the concentrator be one of the allowed units (mine is) and that you have 150% battery with you. That means that if the flight is 9.5 hours, you need to have enough battery to last 14.25 hours.

My unit, as I said is small and I have two batteries, one double and one single that would give me about 7 hours of battery life. That meant I needed to buy another two batteries at a cost of $820.00 all together. I had no intention of doing that just for one trip. I could rent batteries, but rental prices are also crazy.

I decided to get an altitude simulation test which is a test to determine if I need to use oxygen on a plane. The test showed if I kept my butt in the seat, I am fine. However, if I get up and do a jig in the aisle, more than likely I will need to use. Since I had no intention to dance in the aisles for free, I knew I would be fine.

Armed with the results, I went to my pulmonologist and asked for a new letter. The standard letter says that I need to use oxygen during all phases of the flight including taxiing. So I asked him to reword the letter to say that I only need to use it if necessary. He said he couldn’t because the test said I would need it if I was indeed going to dance in the aisles, and in all consciousness he couldn’t say otherwise. Darn you Dr. Ethical!

I went to France back in 2016 and although I did take my concentrator, I decided not to take it around with me because it was a larger unit than I have now and was in a back back and there was a heavy military presence when we were there because of terrorism, so I figured I would play it safe and just leave it behind in the apartment. I made it to the top of Mont St. Michel, some 300+ steps to the top, and was fine. The air in France agreed with me and I never had difficulty. And when we were leaving France they were double checking my documents, and three separate people came to check the concentrator and it became a whole production. So I decided I wasn’t buying batteries and I didn’t want the hassle in a European airport, so I chose not to take my concentrator with me.

We rented an apartment on the fourth floor of a walk up in Amsterdam, and all of the houses in Amsterdam are tall and skinny and the stair cases are more like ladders. I went up and down those stairs every day (albeit slowly) and according to my Apple Watch, we walked 47.5 miles while we were there and I never had my oxygen and I never needed it. I was perfectly fine.

So what does this all boil down to? Two trips to Europe without using oxygen = I need to move to Europe.

If you would like to see my pictures from my trip to The Netherlands, check out my page over at Instagram, @aviewofmyworld. There is also a feed below.

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