Today has been a semi-rough week. Between the Colistin making me tight as all hell and the low grade fevers I have been running, I am exhausted! My FEV1 on Wednesday was 32%. That was pre-bronchodilator but still. 9% drop is not fun!!!!
I know it is the Colistin because it is the same way I always felt on TOBI. I guess these inhaled abx are not good on my lungs. They are supposed to help but all I feel like doing is crawling into a hole for 28 days and hoping that it goes really really fast! It got to the point where now I am doing a treatment in the middle of the day at work. I need to in order to function. It’s really bad. And kind of weird that at the 4 hour mark I can feel my lungs constrict. I go in the back bathroom at work (privacy is needed for nebs lol) around 1ish and by 5 I am tight again. But at least it helps me get through the afternoon. And when I start to get tight I feel the fevers pick up. Very odd.
The fevers started Monday night. It was only 99.5 but it was there. Then I was fine until Wednesday when it was 99.6 at the DRs and then it hit 100.5 by night. Now I am running between 99.5-100.5 everyday. I feel sort of ok, just tired. I assume I am fighting something off. I wish I could figure out who was winning!!!! I’ve been going to bed around 8 every night so sleeping is really helping. Of course I don’t get home until 6:30 so I don’t get a dam thing done at night except for my meds and that’s it. Social life what? LOL! That will be one of the good things when I go on SSDI. AT least I won’t have to worry about my life disappearing when I get fevers and need to sleep. I can sleep during the day yay!!!!
I have another appt this Wednesday so based on how I feel I will see what I need to do. Hopefully the fevers will be gone and then I can be safe haha!
What really stinks is I can't run at all now. I just can't do it. I cough constantly without movement and when you add walking I can't stop. I don't even want to attempt running!!!! It sucks because I am going to have to start over when I am done with the meds. How am I to train for a 5k when every month I have to take a month off? No bien!!!!!!
sorry about the fevers you are doing an awesome effort on the running I hope you can kick this. Oh and dont try to pick back up where you left off, it gets frustrating but after a set back I start almost back at beginning and work my way up, 2nd time goes a bit easier though.
ReplyDeleteYou are describing EXACTLY how I felt last week, except I wasn't doing inhaled abx. I finally gave up and came back to Club Med.
ReplyDeleteRest this weekend and hopefully you will start feeling better.
Im praying hard for you. Infections really do suck!
ReplyDeleteLucie x
Oh Amy, so sorry to hear about your FEV being down like that. Hopefully the meds will start kicking arse on the CF buggers soon! {{{Hugs}}} ~Juliet
ReplyDeleteSo sorry you are feeling yucky. I just got out of the hospital a few weeks ago and may be going back if my lung functions don't go up. :(
ReplyDeletethis post has made me sad, amy:( i do not like your 32% lung function (how is it that my lung function is kicking your lung functions ass by 30% now?!). I do not like the fevers and the need to do treatments during the day b/c you feel so horrible:(
ReplyDelete*sends hugs, soup, healthy lungs, and a hot man*
Praying for you!!!
ReplyDelete