It's a little late in my original-lung days to do this sort of stuff, but with all the time I have I just can't resist...
I've wanted to address this for a few years actually, so I kick myself for waiting, but I have had trouble with pulmicort since the beginning. I haven't been on it long, really. We added it in '08. And truthfully, I'm fairly sure that it doesn't do me a lot of anything, because according to the pro's, I don't really suffer from the asthmatic component of CF.
However, we all have some inflammation, and since that's exactly what pulmicort attacks, the potential is there. When I was first given pulmicort, they had me do this test involving a mouthpiece and 3 little lights that you had to light up with the power of your sucking-in reflex. It took me 8 tries at the time, and all of my energy to make the minimum number of lights light-up. I remember thinking... if I am just barely struggling to do this after repetitive tries... how does that confirm I'll hit the mark with each dose of the drug everyday??
Meanwhile, during every clinic visit I noticed that the wall advertises 3 forms of the anti-inflammatory inhalers. One called "flovent" is given in the ventolin-style inhaler, for which you simply use an elongated tube, press the button, and breathe in gently and hold. MUCH easier than this suck on a powder-containing-tube crap. At 22% lung function (yes.. down again at clinic yesterday...) I am significantly crippled beyond even the struggle I faced in 08 at the beginning... To make a long story long, I found out yesterday that the only reason we are given pulmicort versus flovent is that flovent is not covered. I HAVE PRIVATE COVERAGE!!!
As someone who sooo rarely has a raging lung infection, I think this change has huge potential for me. Not "avoid the list" potential, nor even "avoid the looming admission" potential.. but perhaps just "find an even greater stability of symptoms" potential. Every little bit counts, people! I will let you know what I think, if anything, of this change.
You go girl, anything is worth trying
ReplyDeleteI hated those puffers. I would actually tell them at clinic I was taking them, when I stopped years before tx. The yeast infections in my mouth, no matter how hard I brushed my teeth after, were awful. Nothing ever changed either way for me. And I too believe that most of the poweder was ending up in my mouth since I could not take it all in. I found all three useless. Always liked Ventolin for working out.
ReplyDelete