Friday, October 29, 2010

That's It I'm DONE!

Colistin has finally beaten me. I've tried every single trick I know on how to deal with the inflammation and these awful side effects. Last night was the final straw for me.

I noticed at work that I was feeling REALLY short of breath and overall like I'd been hit by a truck. So when I got home I did my FEV1 monitor and realized, my #'s had dropped about 15%!!!!! No wonder I was having a difficult time :( I took it upon myself to stop it (don't worry Hopkins will be made aware). I just can't keep doing this every other month and hurting my brain trying to work something out.

I think part of the problem is that I'm so used to being on an inhaled antibiotic ALL THE TIME that I think I need it. Maybe not. I'm so open to trying new things, so that's what I'm going to do now.

For the next 2-3 weeks that I should have been on Colistin I'm going to see if it's ok to do this:
Hypertonic saline 2x/day
Pulmozyme 2x/day (if appropriate)
Hit the gym like usual so no gunk can settle.

I'm hoping my plan works, if not I'm not sure what we'll do since the last time I was on TOBI it was a sudden nightmare of side effects as well. I'm sure there are a lot of CF'ers out there who aren't on something every single month. I need to see experiment because for now it's Colistin-1, Jess-0.


Jess said...

I hope your plan works too!

Jess said...

Thanks Jess! :)

Laura said...

I'm not on something ever month. ;) But I also do tobi every other month. Your Tobi is my coliston. Hope it works for ya!!