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Guest post by Angie
WARNING: To those of you that are not my fellow cysters and
fibros or caretakers of aforementioned cysters and fibros, this post contains
discussion about mucus… wait, if that would bother you why would you be reading
a blog about CF? Never mind.
I took my first dose of Kalydeco on a Tuesday night. I took it and went to bed. It’s hard to know if Kalydeco was the
cause or not, but I had a hacky cough that is usually brought on by drainage in
my throat all night. When I got up
in the morning my throat felt really dry and scratchy. The hacky cough continued throughout
the day. The next day (Thursday)
during my morning treatment I noticed that the mucus I was coughing out was
thinner and lighter in color.
Could this drug already be making a difference or was it just wishful
thinking? In the short time I had to research the effects of Kalydeco, I don’t
think I took any action to manage my expectations. I think I was torn between expecting to see a difference right
away and thinking that would not be possible it would be more of a marathon
than a sprint. After all, it’s
taken 36 years for my lungs to get to their current state, so they aren’t
going to improve overnight, right?
On Saturday I was contemplating how my first few days on
Kalydeco had gone. I realized that
I was coughing a lot less than I normally do. This was a bit concerning because my family and friends have
always been able to locate me by the sound of my cough. If my cough had decreased, how would
anyone find me when we were out shopping?
This is a problem I am more than glad to have!! I also noticed I had
more energy. Don’t get me wrong, I
still need my weekend naps, but I think that is just because of my love for
napping.
It’s funny, but I noticed the most changes during my first
week on Kalydeco. I’ve continued
to feel this way, most of the time.
My cough still increases when the weather changes. Since I live in the Midwest, the
weather is known to change anywhere from 20 to 30 degrees in a 24 hour
period. This has always made my
chest feel tight and my head feel like it was going to explode. Since being on Kalydeco, I have noticed
my cough increases with these weather changes, but I’m not having sinus
headaches. I have also had more
big, old looking globs come out of my sinuses and lungs. I take that as a good sign that some of
the old stuff is breaking up. The
true test for me will be when I have my first PFT since starting Kalydeco. I have a feeling we will be celebrating
once again when that day comes!
Note from Ronnie: If you missed Angie's first blog about discovering that she did in fact carry the G551D mutation after many years of thinking she didn't, click here (you can also find her bio). She also gives an update about her emotions after/during receiving her first bottle of "the hope diamond" here.
