Monday, May 21, 2012

Every listed side effect in action! Oh Kalydeco!

Week One:

After waiting for what seemed like AGES, I finally was handed my little blue pills on Saturday. My UPS driver laughed and said "Must be something imporant!" because I was waiting like a little kid for the ice cream truck. My UPS driver is awesome, if we're hanging out on the porch he hops out to say hi to Oliver and give him a treat, even if he doesn't have a package for us. He's just cool like that....but, I digress.

I ripped open the package and did my happy dance, singing "It's here! It's here! It's here!" I then had to spend the whole day waiting just to take my first dose. At 8 o'clock sharp, down the hatch!

12 hours later, another dose, my second was consumed. Around 10 o'clock in the morning, two hours after my second dose I noticed I started coughing a bit more. And by a bit more I mean, all the time. It would just spring up on me suddenly. I had no feeling of needing to cough, I just coughed one cough, and man oh man. I was bringing up gobs full of stuff. I was surprised all of it could fit in my lungs! What was interesting was that it required no effort on my part. It was almost as if I had finished some Autogenic drainage and was waiting for that final huff cough. You know, the one where liquid gold is produced? They were all like that.

After only 15 hours on the medication, I was already seeing results! That, and my nose started running like nobody's business. I also, for the first time in a very very long time, could breathe out of both notstrils. Oh the wonderment of the world. I was extremely sensitive to smell that day.

I also had some slight low grade fevers towards the end of the night, and was pretty tired from all that coughing. I definitely felt a little 'run down' or 'cold like symptoms' with general ickyness towards the night. Think low fever, achy, tired, headache, and of course cranky.

Throughout the week I've noticed on and off bouts of coughing. I've also managed to get some pretty nasty gunk out of my nose. I'm not sure if these plug like logs have been hanging out in my sinus' the whole time, or if I've sneezed them up there from my lungs. As gross as it is, I think they are just hanging out in my sinus', which is really grossing me out. I've snot shot (haha so fun to say!) 4 or 5 of these things. Having CF, I'm not stranger to gross mucus, but man, these things are nasty.

I've started having headaches every day around the same time. They last for the rest of the afternoon/night. Which is a bummer, because I get cranky. My headaches are concentrated in my sinus areas including the roof of my mouth. (I first thought I had a killer cavity, but upon furthur investigation we decided it was indeed the roof of my mouth.)

Today, on day 6, I have a sore throat, and my glands feel pretty big.

Another intersting side effect I've been experience is Acne. Oh, the joys! I can feel like I'm in high school all over again. Normally, I get a pimple here or there, but for the most part my skin is pretty clear. I always have some blackheads on my nose, and more recently my chin, but hey, everyone's got pores.

My kalydeco acne though? Oh it's big, bad, and it hurts! I woke up thinking maybe I smashed my chin funky at gymnastics and just couldn't recall faceplanting into a big blue mat, but really, that situation is something you remember. I just couldn't figure out what this huge painful lump was on my chin. Oh, yea, that's just a pimple that's about to eat my face, no big deal. Sigh. Oh kalydeco I didn't know you'd cause me acne! *Update- by day 9 I have a few more chin eating pimples to join it's friend*

Towards the evenings I've been feeling tired, almost run down.

So this week has been interesting. Lots of coughing, easy coughing, lots of gunk, lots of painful sinus action, and one giant pimple that has taken over my chin. (You probably think I'm exaggerating, but when I showed Kyle he said he couldn't see it... until I pointed it out, and then he got all wide-eyed and said "Oh. My. I thought that was just your chin! I'm so sorry honey!!" )  It's pretty bad.

I'm just thankful it's the weekend so I can catch up on some sleep and get some extra saline and vest time in to help all this junk on its way out.

One last thing I've noticed: the other day after easy coughing I noticed the mucous I was bringing up was white. Not green, not yellow, oh nay nay, white. Intersting? I think so! Exciting? For sure.

And now I will go and edit this at a later date so it all makes sense.
The end.

Weekend Update:
I did 3 days of manual labor, and I wasn't ready to pass out by the end of it. I'm definitely not as tired, less salty when I sweat (Kyle checked- what a dear!), and my headaches are letting up a little. I still have major chin acne, along with some forehead action too, and my sinus' are really hurting. My right nostril has a polyp, and has had it ever since I can remember, but I really think it's restricting the flow that kalydeco has started up there. I think all my sinus junk wants to come out, but is blocked by my huge polyp. It never caused me many problems before, but its to the point where you can see on the outside of my face, that it's begininning to look swollen.

I'm excited to see what my PFT's will look like in 10 days.

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