I was born with Kartagener syndrome, the cilia does not work in my lungs, ears or sinuses. I get repeated infections every month every two months, the weather and the climate here in Ohio where I live the weather changes every day and it impacts my life because either I get infection or can’t breathe because it’s too cold or too hot.
I am on oxygen 24/7 and I take a lot of medication. This affects my life a great deal when I want to go on vacation because I have to haul all my meds and my equipment with me I have a the vest that loosen the congestion out of my lungs. When I feel good one day, I’ll take advantage of it. I get outdoors trying to walk and do things. I took a trip to Florida last year in December and it looks like I was moving in somewhere because of all the equipment and medication I had to take with me. I did complete a couple things that I’m very proud of. I walked a mile with my cousin. She carried my backpack with oxygen and we walked side-by-side.
I wish they get more advanced on how they supply patients with oxygen so we can be more mobile because the oxygen concentrators are hard for me to use because it doesn’t give me enough oxygen. On the plane ride back home I had to do without oxygen for at least an hour and a half because by the time I got checked in and went through TSA, the battery had run out. My wish is for better oxygen on planes so it’ll be easier to travel.
