My FEV1 is 58%. It was 71 in November and 74 before that. 25/75 was 22, 37 previously. The question is WTF? I really want to blame the TOBI my doc has me trying in place of colistin, as i recall the last time I tried TOBI, a la 2006, I was at 50% and felt much the same I do now, tight, congested, and SOB.
My fears are 1) that the acinetobacter I ~maybe~ cultured last month is fo' realz, 2) that this is somehow related to H1N1 and maybe permanent and c) that i have to accept a new baseline that doesn't start with 7_.
My fears are coupled in a few other ways, too. Several people are waiting or new lungs, one beautiful girl just got a set...hope abounds in this, the season of hope. and I sure don't want to rain on anyone's parade. But man.
You know what got me? this. This story about a girl I didn't even know. I just felt pissed off. I guess I was in the right mental space to have this affect me the way it did, in light of the recent carnage seen in Cfland. But I just felt delated: that there is hope in tx, that there is such devastation. I remember Paul telling me once something along the lines of he'd wished he'd never let himself believe there was another life out there wiating for him, those few good months he had. I heard him, you know, but I didn't really understand. I mean, I thought I did. But for whatever reason, that article really put the spit in the cup for me.
I always assumed I would get a tx, I mean ever since my uncle had one and did so well with it. The dude is 57 and 13 years out - just doesn't get a whole lot better than that. I thought that was the way it was. Tx and wah-la. I know different now...
and so I haven't been sleeping well. Well, no, I have, but it is induced in some way - because I can't get the demons to back off. These little green guys that come in and stare at the back of my head when I'm trying to sleep, whispering all the nasty fears that I know we all have right into my ear.
My daughter crawls into bed with me pretty much every night. I just stare at her. She loves me so much, and the thought that I could leave her motherless before she is grown is so suffocatingly devastating I can hardly live with myself.
Which makes me feel, that when the time comes, if I make it there, I will have to try for the TX. Though I don't know that I want to. I don't know if I can handle smashed up hopes. I don't know how to change my thinking, either. and the one person I would have talked about all this with is gone.
so, fuck.
4 comments:
Thank you for this Shannon. I emailed you :)
I have a fourth consideration to throw out there for why your numbers are down so much, and I'm sure it's one you have already considered because you know probably better than anyone, how inextricably linked the mind is to the body; I think your mental health has taken a huge hit and it's manifesting itself in a major way, via your lung health.
Having been in a situation like this myself, I know there is really nothing I can say to comfort you - words are so empty when it feels like your world is crumbling. But please know that I am here for you, I've been through some of the same shit and although I know I could never understand exactly how anyone else feels, I also know how important it is to at least feel as though somebody has heard you.
Hugs shannon! I know, P is who I'd call to discuss all this sort of crap too.
Shannon, Sending you some {{{hugs}}}. FWIW my FEV1 had dropped into the 50s and it took me over 2 years (and a bunch of mixed up abx combos and all sorts of crazy cultures showing up) but a few months ago I was back at 71%. The whole prospect of tx is frightening especially having seen good friends go through rejection. :( I miss him too. Sending you some {{{hugs}}}.
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