It's been quite the fiasco recently with this infection and I think I've nailed it. I've been having these exacerbations back to back for a few months now. Each time I'm put on Prednisone (with out an antibiotic), opens up my airways, wean off the Prednisone, and we're back at square one.
It's been driving me absolutely insane I have to admit. I'm not one to let myself getted bogged down with health stuff and be all negative, but I wanted answers. So I sat down and thought to myself, what the heck have I done differently in the last several years? Because certainly something has changed. Let's face it, yes I know with CF there may come a time when these exacerbations will hit and I won't have an answer, but I'm not there and I KNOW it.
So after many hours on and off I think I got it figured out! I basically stopped TOBI recently! Bam, that's it! I should've known better since I've actually been able to taste the infection/Pseudomonas. Since TOBI is only every other month, there's 2 months out of this period without TOBI or anything to fight off the lovely Psuedomanas. (Colisitin was the alternate on the other months, but it inflames my airways) Then when I was my TOBI month I weaned way back because I was completely losing my voice. I went to 1x every other day. Dumb move, because clearly nothing has been in there effectively for 3 months time. My lungs have been a playground for the PA to enjoy. Not cool.
So I called Hopkins told them all this and they agreed which felt great. So I'm back on TOBI whether I lose my voice or not again, I don't care. This was a tough lesson to learn, but I'd rather lose my voice then my mind again.
I'm also happy to say that my FEV1 is back up beyond baseline!! *Jumps for joy!*
Lemony Romaine and Avocado Salad
4 days ago
6 comments:
I agree it is a B*itch!!
I am on TOBI right now and also have TOBI voice... the overall vote is tho that the TOBI voice is sexy so I guess we got that ;)
Try some garlic pills too! I think it maybe my new thing.
PA has been a PITA since I was 17. If I miss a month of Tobi, the PA uses my lungs like a playground. Now you know the culprit and can get rid of 'seu. She is a Biotch!
I agree to. I've had a really hard time fighting the pseudomonas in my sinuses and lungs. And the times it seems to flare up is on my off months of TOBI. My doc wants me to try the Colistin on alternating months. I used to loose my voice with TOBI...it hasn't been so bad this time. Hopefully you will be able to keep a decent voice :) YAY for PFT's being back up to baseline.
Sometimes I end up doing my TOBI once a day if I wake up too late to do it in the mornings...which is bad on my part..and I'm trying to do better. Praying things turn around for you QUICKLY!
Until recetnly, I'd never been on TOBI chronically. Just for a month every now and then, when I was having an exacerbation. I'm just coming out of my TOBI month, and I can already tell a difference. Now I'm counting down the days until I start back up again...
Hey Jess! I always have a problem when I'm off Tobi. That is why I take it 3 weeks on/1 week off...which is not traditional, but it works for me! Colistin usually doesn't do much for me. But now that we have Cayston, maybe we that will help us out with the off-Tobi periods. I know the voice loss is never fun, but it's sort of worth it so that you don't have the PA creap up on you.
at my clinic, they have some people on tobi all the time. i'm on tobi every day. no off months. i tried a few years ago to alternate months, but on the off months i would always start coughing so much more, and get an infection, so they just said to stay on tobi all the time.
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