Well, as of tonight, I am officially, 100%, totally free.
Yep. I officially have no more port access, no more IVs to infuse, no more home healthcare company to deal with, and no more ridiculous medication schedule to adhere to. OK, fine, so my medication schedule is still a *tiny bit* ridiculous, but no more so than any other normal, healthy, fabulous cystic!
And it feels absolutely amazing.
I didn't think this whole "IVs for 6 weeks" plan would be too bad, and honestly I guess I have to admit that it really wasn't. Aside for the whole gravity drip snafu, the frustrations of dealing with the home health nurses, and the bum deal of being on an ineffective drug for nearly half the time, it could have been a lot worse. But let's face it, that's not saying a whole lot. By the end of this thing (i.e., tonight) I was literally going crazy! And to all those amazing CFers out there who have endured months or even years of constant IV abx, you are all my new heroes. Seriously, well done to you!
Unrelated sidenote: I've started jotting down my meds, exercise routine, communications with my doctor, and recorded HR/O2 levels in a little notebook I bought. Sort of like a daily medical journal, and I also make a note of how many hours I slept and any other pertinent information (e.g., worked until 10 pm, just as a random example). Yes, I do realize that is totally OCD and crazy on my part, but the thing is, I've been getting sick lately a LOT and I wanted to just try tracking everything health related for a little while to see if I can notice any patterns. At the very least, it holds me accountable in a weird way, because if I decide to skip exercise or a neb treatment one day for any reason, or totally blow off sleeping, then I have to write it down and actually fess up to it later. But mostly I'm not doing this to scold myself (or even to reward myself, though that would be more fun) - it's really just so that if I get sick again less than a month out like I have the last couple of times I can look back and try to see when it started and if there's anything that might have triggered it. And maybe in 6 months I'll have enough information to be able to make some important adjustments and stop this crappy cycle.
Or I'll just have a really creepy health journal. Either way.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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