Having a hole in your throat is actually one of those medical things that's worse than you'd think. It's rare that I really talk about this -- I just hate sounding all whiny, I don't like to remind other people, or myself, that I have more limitations than I'd like to admit. There are a lot of things people don't realize people with trachs deal with. Think about the path air takes when you breathe in through your nose: all those hairs in your nose catch dirt, dust, fibers and who the hell know what else. When I breathe thru my trach, the only thing between all that crap and my lungs is my trachea. I have a large hole in my throat that is open to the inside of my respiratory system.
Instead of blowing my nose, I need to blow my trach. If I don't take it out and clean it daily, it stinks and the skin around the trach gets itchy and rashy. The absolute worst, most heartbreaking part of having a trach, for me, is the obvious restriction -- water. No trach can be so tight that water won't get in from the space around the outside of the trach. This is such an issue that one with a trach could drown just taking a shower. It took me years, but after spending years coughing and choking on water every time I got in the shower, I found this odd looking plastic thing that goes around my neck and Velcro's in the back. In the front, it's this robotic, Star Wars-looking guard, but even then I occasionally choke on a drop of H2O. Of course, it's bad enough that it complicates taking a shower, but fall asleep in the tub and slip down.... I don't know how much water you need in your lungs to drown, and dry drowning freaks me out.
It's easy to think about what else I'm missing out on-- I lalalalove water parks. Living in Denver for almost 20 years and never went to the water park. Lived in LA for about a year and never swam in the ocean.... living blocks from the beach in Orange County was a constant reminder that I'll never be able to learn to surf.
Yeah, I'm "lucky." Obviously things could be much worse. But they aren't. I don't need to process and deal with what I don't have to worry about, and what didn't happen to me, but what I have been through, and, man, it really sucks that I can't ever surf!
I really would LOVE to find a vocal cord specialist with the same type of paralysis as I have, or at least to find one with the compassion and dedication to help find a fix.
You'll hear a lot about mostly the fucked up doctors I had, but sometimes I'll give a rad dr. props. Here's a bad one: one of the drs that has done a trach surgery for me (in the early years, with the hospital straps they give you to use around your neck that hold on with velcroe, I coughed out my trach in the middle of the night and it closed before I woke up and realized it - so, I have had trach surgery about 4-5 times, I believe. Interesting fact here: I left the hospital able to breathe on my own.... the halo I was in and the damage to my eyes directed my neck to heal at an angle and crooked/tilted, and all the nerves on my left side are stretched to hell -- 7 months after my initial month long hospital stay I was rushed to the hospital with co2 poisoning because my cords wouldnt let the gas release)... anyway, this one doctor told me he'd never see me again because I was very depressed at the time an asked to spend time in the psych ward -- he said I was stupid for being depressed and he would no longer see me because I had a perfect quality of life and was weak.... He not once asked me why I was depressed, and this was only within 2 years of the accident.
Usually, I'm ok with having a blowhole. Really. A lot of the time, it's actually funny.......
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