Breathing Deeply: My Life With Cystic Fibrosis

Yesterday was a busy day for CF-related things. I had the altitude study done at the hospital downtown. Parking was a bit of a nightmare, mostly because it was a parking structure. Those things give me the creeps. I was too creeped out to take the elevator so I took the stairs which were nice and in the sunshine. I was proud of myself for taking a more active route.

The altitude study was a lot simpler than I expected it to be. First they drew some arterial blood gas. Thankfully the respiratory therapist used a tiny needle, so I hardly felt it. Next he attached the pulse oximeter to my ear and took an initial reading. 99% on room air. Pretty awesome, eh?

Next they handed me this big hose with a mouthpiece on it. The hose was attached to a giant cylinder of 15% oxygen, which is approximately the concentration that the oxygen is on planes. For 20 minutes I just had to breathe in and out. Every so often they told me to take a big sighing breath. My saturation dropped from 99 to 91, which means I should be fine on the plane. I might get a little bit of a headache, but I'm bringing my vicodin so I shouldn't have a problem.

I think the test must have affected my FEV1 because at my clinic appointment last night I had the lousiest numbers I've ever seen. My first one was a mere 1.3L. Brad's jaw dropped and I got a little teary. How could it be so low after working so hard with the IVs and oxygen therapy and stuff? My next ones weren't much better. I didn't even hit 1.6, let alone the 2.3 that my doctor wants me to have.

I just can't understand how I can feel so good and have such bad numbers. My energy level is fine, I get up on time in the morning, I don't feel like I need naps. The only thing that's bothering me is my sinuses. Brad and I are praying that the sinus surgery happens soon.

Today the company who provided my oxygen concentrator dropped off what was SUPPOSED to be a portable oxygen concentrator for our trip to New York. I was absolutely horrified at what they brought! It was just as big as the concentrator in our bedroom. The only thing that made it portable was that it's on WHEELS! Oh, that and they provided a big stupid cardboard box for us to carry it in to check onto the plane. The thing was the size of my old HillRom vest. 40 lbs of disappointment. Apparently portable does not equal travel-ready.

I promptly opened my wallet, ran to the computer and looked up the Inogen One website and placed my order. It's well worth the out of pocket expense to have my own concentrator that is actually portable and a good travel size. I requested priority shipping, so it will be here on Saturday. I hope the holiday weekend doesn't mess things up.