Saturday, August 31, 2013

Kalydeco, Day 2

Day 1, dose 2: Took my second dose of the day shortly after dinner and I'm happy to report I was not up all night coughing. I didn't really feel any different overnight than I typically do.

Day 2, dose 3: This morning I took my Kalydeco with breakfast again which was 30 grams of fat, 21 grams of protein and 710 calories. I had a slight cough this morning, but nothing more than usual. It has gotten better because the mucus is now mostly yellow with only teeny tiny specks of red blood. So this morning I only did about five minutes of my HTS neb (advised by nurse after she read my previous blog) so I didn't inflame or irritate my lungs anymore.

Day 2, dose 4: Nothing new since taking my second pill this evening, but this morning/afternoon I was coughing up a lot of thick, green mucus. It was a bit hard to cough up at times and there were a couple times when I was coughing so hard I thought I was going to puke, but I never did. I was happy to see all of that nasty mucus coming out of me and I'm hoping that continues all weekend, especially since I'm home.

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! :-)

Tuesday, August 27, 2013

Kalydeco Update

I've had a few people ask me if I've started taking my Kalydeco yet and sadly the answer is still, no. I got a call from the pharmacy last Wednesday telling me that I was approved and to set up delivery. We set it up to come the following day, Thursday. Well later Wednesday afternoon, I got a call back from the pharmacy telling me they "didn't have any in stock" and wouldn't for another week, so we rescheduled to have it arrive the following Wednesday (tomorrow). Then, I got another call this morning telling me that they needed to reschedule delivery again, for Friday (hopefully), because apparently they're on back order or something - the lady on the phone wasn't very specific. Needless to say, I'm a little annoyed. Vertex and the pharmacy are not making a good first impression right now. I called Vertex this evening when I got home from work to see what the hold-up is, but they were already closed so I left a message. I'm hoping I'll hear back from them tomorrow and get some answers. And I'm really hoping I can start taking this medication this week!

Monday, August 19, 2013

Oh, Happy Day!!

I learned today that I have been APPROVED FOR KALYDECO!!!! I wasn't too stressed about not being approved, to be honest, because I have the correct mutation for it (G551D), but sometimes you just never know... I found out this morning through the woman at my CF clinic who put in my paperwork - she emailed me saying I have been approved from 8/15/13 -- 8/15/14 (Do I have to get 're-approved' every year?) and she also asked if I received a call to set up delivery. I didn't have any information to go off of as to who was going to deliver the medication, until I finally got a call this afternoon after school telling me the pharmacy I'll be going through and their phone number. Of course as soon as I got home, I called the pharmacy to set up delivery and the woman told me they just got the script an hour ago! Ha, she probably thinks I'm crazy for calling so soon!

Right now we're waiting for their pharmacist to put in some paperwork/information through insurance to figure out if/what my co-pay will be for Kalydeco, then we'll be able to set up delivery. She told me that if I don't get a call from them by Wednesday morning, then to go ahead and call them to set it up....Guess what I'll be doing on my lunch break Wednesday?!

I'm really excited to start taking this drug! If you don't know much about Kalydeco, or maybe need a refresher click here. These are my hopes for what Kalydeco will do for me:

  1. Improve my lung function, maybe get it back in the 90s?!
  2. Help me gain weight
  3. Help me with my tummy troubles (although, probiotics have been helping, too)
  4. Make my body healthier overall for a pregnancy in the future
  5. Possibly allow for me to cut back on a medication or two... (wishful thinking?! I hope not!)
THANK YOU, THANK YOU, THANK YOU to all of you who have ever donated to the Cystic Fibrosis Foundation to fund the research for this medication!!!!!!!!! BUT, we can't stop here! There are still another 96% of CF patients who don't have this mutation who are waiting for a drug like this to help them out! Please continue to raise awareness & funds for the CFF to fund the research of the many drugs working their way through the pipeline!

Thursday, August 15, 2013

Positive Thoughts Thursday: My Job!

Woah, look out! Two "positive thoughts Thursday's" in a row! I've been slacking on the blog posts this week, but I feel like I have a pretty good reason this time around...back to school!

    • I am so thankful to have a job. I am so thankful to have a job that I LOVE, in an awesome building with the best staff! Yesterday was the first day back to school for our students (teachers started Monday) and I am just so happy. I'll admit that Tuesday I was feeling a bit frazzled, I felt like I was starting my first year of teaching all over again because I switched grade levels (and was doubting my abilities), but as soon as that first student walked into my classroom Tuesday night for Open House, it all came back to me so naturally! It made me so happy seeing their excited and apprehensive little faces coming into a school and/or classroom that they didn't know, but then leaving feeling a bit more excited and comfortable about the following day. :-)
    • I received the best compliment, twice, on Open House night and once again yesterday morning at school! On Open House night, I had two parents of students I had in my class last year, express to me how happy/relieved/excited they are for me to be their child's teacher again this year!! *Made me feel so warm & fuzzy inside!* And then yesterday morning, I learned that I have a cousin of a student I had last year, and those parents told the parents of my current student, "Oh you'll love her, she's great!" Best feeling ever!!!
    • And even though I am no longer kindergarten, I've already been keeping an ear out for hilarious things my class will say this year! I'll be calling them "First Grade Funnies". The hardest part is remembering them at the end of the day because I can't (usually) write it down when they say it! But I'll leave you with this one that I thought was cute: One of my little girls was leaving the room and she said, "Bye Mr. Grouper".....not quite, but she tried! :)

Thursday, August 8, 2013

Positive Thoughts Thursday: Friends, Family & Kalydeco

Each week I've been trying to spend time reflecting on the positive things going on in my life and/or the world around me. I know I've been slacking lately, but I'm really hoping to get better. What are some positive things going on in your life right now?
This is a picture Tim sent me while
I was away for the weekend at Catie's
wedding. He's made a lot of progress.
I'll do before & after pics later.

  • I am so grateful for my husband, Tim! He has been working non-stop since the day we have moved into our house! Between working his normal job during the day, driving an hour home and then going straight to work on the bathroom remodel until about nine each night, I don't know how he hasn't taken a day off! He is such a perfectionist which really helps when he's putting tile in the bathroom, and his work always looks good. 
  • My friend, Catie, got married this past weekend!!! She couldn't have asked for a better day to get married, it was gorgeous outside and everything went very smooth. The ceremony was beautiful and the reception was a TON of fun! They had a Motown band which was amazing & had the dance floor packed the entire night!
  • I'm so happy to have had this summer break! It was really nice to be able to spend time with a lot of my friends and our family this summer. Unfortunately, I did not stick to my exercise/eating routine like I should have, but I guess I'm not really surprised. So I am really looking forward to getting back into a routine next week. My first day back to work is Monday, and the kids' first day is on Wednesday! I'm a little nervous about teaching first grade this year because I've never worked in this grade, but I have two wonderful teacher-partners who I know will help me along the way. :)
  • My doctor and I have decided to start the paperwork process on Kalydeco now instead of waiting until October. The more I thought about it after I left my last clinic appointment, the more I starting thinking, "Why wait?" The paperwork was submitted Tuesday and they said it typically takes about two weeks for the process, but depends entirely on insurance. So there's a very good chance that I could be starting Kalydeco in September! I'm looking forward to it and I'll keep you posted as I know more!! :-)

Thursday, August 1, 2013

A Day in the Life: Chapter One

I am SO excited to finally share this with you!!!! I've hinted at something coming up for a while now and I can finally share this wonderful experience with you! I was approached at the beginning of this year by the people at CF Living because they were looking for a "fresh face" for 2013. Someone had referred me to them, which I found so inspiring. After several phone interviews, they came out one weekend in April to film Tim and I discussing our lives with CF. I am so proud and happy that Tim was willing to do this with me! I feel it's so important to get his perspective, not just mine, because really it's something he has to deal with, too. 
I cannot believe the amazing amount of feedback there's been from the video since CF Living released it one week ago. The video has had over 300 likes, over 140 shares and over 50 comments! And that's just off of the one posted by CF Living! I've seen fellow CFers, co-workers, friends, family and people I don't even know, share the video on their Facebook & Twitter pages, which I appreciate so much - the more awareness of Cystic Fibrosis, the better!!! 
I never thought I'd have the opportunity to be a part of something like this, and when the chance came up there was NO way I could turn it down! THIS is exactly what I was looking for when I was going through my teenage years when I didn't want to accept CF as a part of my life. To read all of the comments about how I'm 'inspiring', 'motivating', calling me a 'role model', telling me that I 'give them hope' it's an unbelievably amazing feeling! 

I can't wait until the next four chapters (Work Life, Routine & Goals, Marriage & Family, and Exercise & Nutrition) are out because they each touch on their own subject and I think they'll spark a lot of great conversations. 

So without further ado, if you haven't seen it yet, or you'd like to watch it again, here's Chapter One: Meet Colleen.

A Day in the Life: Chapter 1, Meet Colleen