I think one detail I need to remember is that it is currently cedar season here in Austin. Many people, including myself, suffer from cedar allergies that make them miserable, CF or no CF. This time of year, I almost always end up needing a round of antibiotics to treat a sinus infection. The week before I started Kalydeco, I had lots of mucus in my sinus rinses. So, some of what I am feeling is most likely influenced by that.
Day 4: More night sweats a bit of tightness in my chest, but I didn't need my inhaler in the middle of the night. Woke up feeling wheezy. Had the usual mid-morning cough & coughed up a big (for me) blob of green gunk. I went for a run and wasn't able to run any faster than normal (my pace is about a 10 minute mile). At the end of my run, some sweat ran down my face and into my mouth, and it tasted salty. But, I wasn't coated in salt, like I sometimes am. Still, I started to worry that Kalydeco wasn't working.
Day 5: More night sweats and nighttime wheezing. But, I didn't wake up with a sore throat, which almost always happens thanks to post-nasal drip, and my mid-morning cough was a bit less. By noon I started to feel really good. All afternoon I kept taking deep breaths, expecting to feel the usual bit of mucus build-up on the back of my throat, but it wasn't there. I started to get excited that maybe the Kalydeco was doing it's thing!
I have also been obsessively using my PiKo FEV1 monitor, and I am holding steady at around 3.2 liters. My peak about a year ago was 3.6 liters. I'm not sure if I am going to see much of an increase because my FEV1 is usually 110-115%.
Last night I didn't have any night sweats or wheezing, but I woke up wheezy and congested. We'll see how today goes!
5 days ago