Tobi to blame for lung colapse due to excesive drying out..now to try collistin

[crazygrl1747]

Im in hospital rememer i just recently posted a topic saying that i did so well thursday 35% fev that i workd my ass of for for two months to get!..im down to 30% ..i thiught i been having diaphram muscle problems because when my lung colapsed i thought i had strained it..well i did but thats not been the issue..we have come to realize im having sever reactions to tobi..it drying me out excesively no matter how much i drink water..and sunday inwas at the er because my airways tightend up completely!!! Sunday night i came down to my cf specialist an was admited because something i knew was not right..so i been in here and from 3days of tobi my fev droped 5%..im beyond frustrated! I was doing so well i knw il get it back..but now that im competly cloged up some i concernd when its ready to shift which wil be tomorow i pray it moves easily and i can breathe the best i was feeln like inwas before starting this evil drug ..i was in july for the same feeling on tobi and april when my ljng colapsed i also didnt have pulmozyme so imagine what my airways must have been like when i didnt have the thinner of pulmozyme the tobi straight savaged my airways and dried me out completely which resulted in my lung colapse..an that hurts me because i wish i knew more then cause i would have prevented this colapse..all i have to say is be careful this drug was not for me..and now im being lookd at starting inhaled colistin or levaquin any info ot questions feel free to talk to me ..if it wasnt for me steppn up i stil be inhaling tobi and heading for a secon lung colapse

 

[litteni]

Just a suggestion....you might want to make sure that you are clear that this was just YOU that had problems with Tobi. There are a whole lot of people with CF that have not had problems with it and need it to clear up infections. It worries me when someone gets on here and says a drug is awful and no good because they had a bad experience with it. I worry that new parents or parents with kids who will be using it will be hesitant to try it because of a generalization based on one persons experience. I'm sorry that happened to you, but there are a whole lot of us that have good experiences with it.

 

[pixiedust71]

I think we all react differently to medications. TOBI has been a lifesaver for me. Literally! I take it every other month and I can't take pulmozyme! I've tried 3x and each time it makes the mucus so loose I can't hurl it up and I get sick and practically drown in it. Yes, my mucus is like glue but I do good CPR and can get leverage on it to cough it out. Colistin made me bleed, bleed, bleed. Doc took me off that and said never again because I was going to embolize. Just saying... We're all different. I really hope you get to feeling better and pray you find something that works for you

 

[alegris]

Yes everyone is different. I'm sorry you're having such a hard time. I can't tolerate Tobi either. It tightens my chest up so badly that I can't breathe which sounds like the same thing that's happening to you. I know it feels bad now but your chest should start to feel better in a few days. In the past when I was 'recovering' after Tobi, I stopped doing all inhaled treatments for about 3 days. Otherwise my chest would just tighten back up again. I hope you find something that works.