Friday, August 30, 2013

Kalydeco: Day 1

I took my first pill at 7:15 this morning! :-) But before I get ahead of myself, I'll fill you in on the delivery mess annoyance situation. Vertex called me back on Wednesday morning to inform me that the pharmacy never actually ordered the Kalydeco (NOT that it was on back order!) last week which is why I didn't get it - apparently whoever was in charge of ordering it didn't know instead of asking for help, they didn't do it at all...hmm, sounds like a great idea, grr! I thought that was so rude of the pharmacy to lie to me, so I called the pharmacy to complain and they overnighted the Kalydeco to be delivered on Thursday (after some-what apologizing). Anyway, it was there sitting on the front porch waiting for me when I got home from work yesterday, so that's all the matters! :) Then, yesterday afternoon, a case manager from Vertex (they've been great so far!) called me to make sure I received my shipment and apologized again for the delay. She reminded me to take it with fatty food (studies have shown that its more effective when taken with fatty foods) and wished me luck.

I'll be taking the Kalydeco every twelve hours, so I decided to do 7am and 7pm since I'm always up at those times, and they're pretty close to our typical meal times. This morning I prepared my breakfast of a peanut butter and jelly sandwich (I've been on this crazy pb&j kick lately), an Ensure Plus and a peach yogurt. The peanut butter alone, or the Ensure Plus alone, was enough grams of fat to take with the Kalydeco, but I wanted to really make sure I absorbed that first dose ;), plus that's a typical breakfast for me and I keep with my typical routine. After I swallowed it, I thought to myself, "And now I wait...".

I wasn't expecting any immediate symptoms/feelings/side effects obviously, but I was really tuning into my body this morning to make sure I didn't have any negative side effects like dizziness or headache. With it being (no joke) close to 100 degrees in our school today, it was hard not to get a headache, but I really did feel fine all day at work - no negative side effects from the Kalydeco, that I could tell. But when I got home this afternoon, I noticed that I had a pretty productive cough. My lungs feel like I've done some type of exercise a couple hours ago and now things are moving around & need to be coughed out....Note: I haven't exercised in several weeks (shame on me!). Typically in the afternoons, and during my second treatment of the day, I don't cough up as much mucus as I do first thing in the morning....not today!

Call me crazy, but I swear this medication is doing something already...!

I just finished my second treatment and have a pretty good sized collection of mucus in the Dixie's like Christmas...because the mucus is red & green -- there's lots of red (blood) streaking in my mucus this afternoon...hmmm...It's not straight blood (which is better, I think), but it's just red and green mucus. I also just realized that I'm not covered in a thick layer of salt. I was sweating so much today at work that my clothes were sticking to me by 10am, at least. Now I know I've been home for about an hour and a half now (in the AC), but I still don't feel like I have as much as I would think after feeling so disgusting today. I don't know if that's the Kalydeco, or if that's just because I was too sweaty or something...

So there you have it. I really hope it's not all in my head, but I kind of doubt it since I have the mucus to prove it. I'd provide a picture, but I'm sure you'd think that's pretty disgusting, just as I do, too! I'm about 2 1/2 hours from taking my second pill for the day and am kind of wondering if I'll be up all night coughing. I'm also wondering what tomorrow's morning treatment is going to be like with all of this mucus movement overnight?? I'll be keeping you posted daily! :-)

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