Kalydeco Week 3

I just wanted to post a quick update, although there is not much to report. The Cipro seems to be helping, but I am still coughing, my lungs are still rattling, and my FEV1 is still down. Greg and Grace are still coughing too. Sigh. Hopefully I will have something to report soon!!!

2.5 Week Update

This coughing virus is a beast! My husband and I are both still coughing. Last week it was so bad I almost threw up a few times, and the same thing happened to my husband. I was talking to a friend who said she and her husband had the same virus - she said she was coughing forever and that her husband threw his back out.

So, with that said, I still can't really say for sure how Kalydeco is helping my lungs. I usually blow about 3.3 L on my FEV1 monitor. At one point last week I was struggling to blow 3.0 L, but I started feeling better, and at one point I got it all the way up to 3.9 L! I didn't believe it the first time, but I managed to blow 3.9 L two more times. H-O-L-Y C-O-W. The highest I have ever blown on that thing is 3.6 L, and that was over two years ago, when I was pregnant with Grace and my FEV1 was 120%. BUT, two days ago my numbers went back down and I started feeling worse. I had horrible night sweats and fell like crap yesterday - coughing a ton and feeling short of breath. So, last night I started Cipro.  I already feel better this morning. I don't remember Cipro working this fast in the past, so I'm not sure if I would have felt better anyway. But, hopefully I am officially on the mend!

Kalydeco Days 8 & 9

Warning! Talk of mucus ahead.

I'm sick! Everyone in the house has some sort-of coughing virus. No other symptoms, just a cough. But, I am the only one with a productive cough...I was hoping Kalydeco would prevent that, but maybe it's too early, or maybe it's because I have some mild bronchiectasis. My mucus does, without a doubt, seem thinner when I cough it up - it feels just like saliva, instead of a blob. So that is exciting.

If it weren't for my husband having a cough too, I would have chalked this up to part of the "clearing out" stage. Last night I was coughing so much I was gagging and I couldn't sleep, so I ended up taking cough syrup, something I never do. Wow, that stuff worked instantly!

My sinuses continue to feel awesome. Hopefully my lungs will too once this cough goes away.