Welp, since news broke that I am going to be listed, I have had a few thoughts bubbling in my head. So why not share them.
I got to my appt and Dr. Eric Clapton and i sat in a room burried in the bowels of the hallway. He told me we had to decide if i was going to be listed. On one hand, I am still considered a little early (b/c i'm not sick with infections blah blah); on the other hand, my quality of life sucks and I can't do next to anything. He agreed and listened to my point about it not being a smart move to wait for me to venture into full throttle sickness what with my inability to fight off infections and all. So he said, "Well....I guess we'll go ahead and liste you." and he smiled.
But i didn't.
I just looked at him. I knew he was going to say it....but it was like a dream. It was scary. I want this so bad but I couldn't help but wonder if i was stepping into a death trap. I knew i could turn back and say, "I think I can wait!" but I didn't. I didn't b/c even though i felt ok I had to remind myself that for 99% of the time I feel like crap, and that if i don't get listed NOW there's nothing for me to do but sit and wait to get worse. And who wants to wait around for that? That's not something to look forward to. I had that life last summer...where I sat and waited and went in and out of doctors office's and sleep labs and respiratory places all the time. I don't want to continue doing that. No one should have to get used to that kind of life style. No one.
So I sat there and listened....I felt like my eyes glazed over and I probably looked stoned....I felt like I was in a tunnel and me and the doctor were getting farther and farther apart.....and that I was drifting off into unknown, chartered territory...
Which I was. And i am. And i have to realize that if things stay the same, they will never get to change. I will continue to sit at 34% (max) lung function. I will continue to be limited in physical activities and I will continue to be tired all the time. I will put myself at risk of developing pulmonary hypertension (which i am afraid i may be developing) and I will continue to be engulfed in a life of limitations and worry.
What is there to look forward to with Bronchiectasis? WHAT?! A one-way ticket to shitsville? B/c i'm pretty sure when I got on this bus i beleived the ride would only be temporary. I didn't think it it was a 'forever' kinda deal. Whatever. I can't worry about that; what's done is done.
In a weird way, I am scared about being listed b/c being listed means new lungs which means c-h-a-n-g-e. As much as i fight and hate bronchiectasis, it is a cocoon of protection that surrounds me; I am used to this life of being holed up and dependent. I know I can survive but it's scary.
I have to break out of this fucked up cycle and move on - so I am ready for the change.