Saturday, May 26, 2012

Kalydeco: First Week In

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!

Next Update: This truly is a wonder drug: I’ve started running (although I use the term “running” loosely)!

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