Tuesday, December 31, 2013

Jeremy Locke

The world lost a good man early this morning and my heart is breaking. There are so many emotions running through my head, but mostly anger and sadness. I'm angry that Jeremy was only given 29 years on this Earth. I'm angry that CF and pneumonia teamed up against him. I'm angry that he was never given his second chance. I'm sad that he was only married to Jessie for just over three months. I'm sad that the last time we saw him was on his wedding day. I'm angry and sad that Jessie is going through this.

I'm happy (and lucky) to have known Jeremy and that I call him my friend. I'm happy that we got to live across the hall from Jessie & Jeremy for a year and got to know each other. I'm happy that Jessie decided to wear a Great Strides t-shirt to class so that I could use it as a conversation starter which has led to years of friendship. I'm so happy that we attended Jessie and Jeremy's wedding in September because it was the most love-filled wedding I have ever been to!

I hate you, CF. I hate you for taking away my friend and making his young wife a widow. Watching you take Jeremy so quickly makes me want to kick your ass even harder than I am now - to show you that you can't keep doing this!

Please keep Jessie and Jeremy's family in your thoughts and prayers as we wrap up this year and as they grieve, mourn and celebrate the life of Jeremy.

Monday, December 30, 2013

In Need of Positive Thoughts

In September, Tim and I attended the wedding of our friends Jessie and Jeremy. Jeremy has cystic fibrosis and is currently in the ICU fighting pneumonia. :( He's been in and out, and not awake very much, and his body is fighting very hard. Jeremy doesn't have the greatest lung function right now, but he has a lot of people thinking of him and fighting with him.
In the fall, he was evaluated for a lung transplant, but was considered too healthy. Since then he's had to have a blood transfusion and hasn't been feeling the best. Now, unfortunately he's battling this pneumonia. Jessie did update me this morning saying he's doing better today than yesterday and that he's fighting so hard...baby steps.
Whatever it is you do - pray, send positive thoughts/vibes- I'd really appreciate any of that for our friend and my fellow fibro, Jeremy, and strength for his wonderful wife, and my good friend, Jessie. I'll update as I get information, but please keep them and their families in your thoughts and prayers during their tough time right now. Thank you!!!

Saturday, December 14, 2013

Hello Out There

I'm still here! I'm so sorry to neglect this blog recently, but there hasn't been much to talk about or report. Work has been crazy over the past week or so with the end of the quarter and Christmas break approaching. The kids are nuts and I am ready for this next week to be over already! I've been feeling well. Finally back to my normal-self after that nasty bug, or infection, whatever it was, in November.
Christmas parties and madness is in full swing now. We had our staff Christmas party last night, then we have our Christmas program and party with the kids this week.
Tim and I have Christmas with the Veitengruber's next Sunday, then we'll see my parents on Christmas day, and then celebrate with his mom's family the Saturday after Christmas. We're also getting professional family pictures with his mom's side that day. The last time they did that was right after Tim and I met, so I wasn't in them. Since then, there's been four weddings and a few grandchildren for Tim's mom & step-dad, so I guess its time for an update. After next Saturday, things should definitely slow down a bit, thank goodness. As much as I love Christmastime, with the lights, music and decorations, I feel like its way too hard to see everyone (the people get offended) and that people are way too stressed about everything. Its supposed to be a happy time of year, so I try to avoid the stress as much as possible. I've been trying to leave my work at work, surround myself with happy people, listen to calming Christmas music and just relax. What do you like to do when this time of year gets so stressful?

Sunday, December 1, 2013

Thankful November, Week 5

This is my final thankful November week. If you'd like to see the previous weeks, follow the links (1, 2, 3, 4). These are in no specific order, just whatever I can think of for the day, no matter how big or small.

24) I love being an aunt! We have the three cutest nephews around and yesterday we got to spend time with them. Isaac (2) wasn't feeling well because he's teething (poor guy!), but he even his 'evil eye' was still adorable! And then we have two more nephews, brothers Cole (3) and Liam (6 months). Cole is getting so big, and learning & talking so much more. Liam was passed around all day and ended the evening zonked out on my chest - it was so precious! I love spending time with our nephews and can't wait until we have our own kids, so we can watch the cousins all play together. :)

25) Cooperative, involved, supportive parents of my students! I had several dealings with uncooperative, under (or non-)-involved and un-supportive parents today and that just makes me realize how thankful I am for those that care...and show it! Teaching is not babysitting. Teaching & learning do not stop (or only happen) at school! We have to work together to do what's best for a child. That means helping with homework, holding their child accountable for their actions, coming to parent/teacher conferences, field trips, etc. Supportive parents rock! 
I came across this article, called Parents Need to Be Reminded That Teachers are People, Too, posted by a fellow teacher and really enjoyed it! I really wish I could share it with my students' parents. So if you're a parent, or think that teaching must be so easy, go ahead and read that article. Also, come work with me for a week and then see what you think! :)

26) I am beyond thankful for the CF community tonight! Chapter 4 of our Day in the Life video series came out tonight (it's my favorite one out of the five) and I am overwhelmed (in a good way) with the amount of positive comments, blessings, encouragement, "likes" and shares - it's a wonderful feeling! THIS is the exact reason I did these videos. I want to inspire others with CF (or those who know someone) to have a more positive outlook on their disease. Realize that it IS possible to live a "normal" life as long as you take care of yourself.
I'm also thankful that Tim did these videos with me! I think it's really important for the CF community to hear the perspective from a spouse. He's the one that keeps me going! Even though he might not have to remind me everyday to do my treatments anymore, our relationship and our future is my motivation to be compliant and be as healthy as I can. Thank you honey, you're the best!! :-)

27) Four day weekend!! Although we're going to be pretty busy this weekend, I love the fact that it's four consecutive days off with Tim. I hope we're able to get a lot done in our spare bedroom and I'd love to bust out the Christmas decorations!

28) I'm thankful for a hard-working, super-handy husband! We got a good chunk of items accomplished today in our spare bedroom - second coat on the walls, I repainted the baseboards and Tim installed a ceiling fan and two pot-lights. I really wanted to keep going, but it was time to stop for treatments and dinner. I'm also glad that we're not stressed out about trying to have a fancy meal this evening, especially because we're not fancy dinner kinda people. We've decided to not make dinner ourselves, that we're going out to eat = no dishes or cleaning! HAPPY THANKSGIVING!

29) Today I'm thankful for friends! Our friends Karissa and Ryan were down in our neck of the woods visiting family for Thanksgiving so they decided to stop over at our house for a little while. It was so good to see them. Since we moved last year, we're about three (or more) hours away from all of our friends from college, so its tough to see them often. I appreciate that Ryan and Karissa took time out of their family weekend to come visit. :)

30) Last, but definitely not least, I'm thankful for KALYDECO! I haven't felt the best for a few weeks this month, and I wonder how much worse I would have felt without Kalydeco helping my lungs and body. I'm thankful that its having such a positive impact on my body and that it will help prolong my life. I hope that next November I'm able to be thankful that more of my CF friends are on something that helps them this much, too!

Saturday, November 23, 2013

Thankful November, Week 4

Each day in November, I'm taking the time to post something that I'm thankful for - no matter how big or small - then I'm posting them at the end of the week. Click these links to see week 1, week 2, and week 3.

17) Today I'm extra thankful for the roof over our head! There were a lot of severe storms that tore through the Midwest today, and thankfully they stayed clear of our town and house.

18) Pandora radio - sounds silly and insignificant, but I love it. I don't want to have to pay iTunes a dollar per song to download (legally). I love that I can change the station depending on my mood (ie: Michael Buble Christmas - I'll have to bust that one out soon...after Thanksgiving!) and that it introduces me to new songs. If you haven't caught on - I love listening to music! :-)

19) I'm very happy to be done taking my Cipro! Although I'm still not feeling 100% (I need to get better about doing extra treatments), I'm just glad that I'm not taking Cipro anymore. I am also happy to report that this was the first time, that I can remember, that it didn't give me huge tummy troubles! I'm wondering if that's because I'm now taking daily probiotics....which leads me into tomorrow's post.

20) I'm super thankful that someone created probiotics!!! They've completely changed my life! I am no longer extremely gassy and/or bloated daily....or ever! I feel like a "normal" person as far as that's all concerned! I now go to the bathroom once...did you read that CFers, ONCE a day and feel SO much better! If you are not taking them, I strongly  recommend talking to your doctor about what benefits they could have for you!

21) Modern Medicine/Research - I'd probably be dead if it weren't for all of the advances in medicine and research today. I know that sounds terrible, but it's true. If I were born with CF 50 years ago, pretty much all of the medication I take wouldn't be around. I'm very, very lucky and thankful to have access to the medications, and team of wonderful doctors and nurses, that I need.

22) I'm thankful for a night out. I'm not usually one to go out much, I tend to be a home-body, but I'm glad I went out tonight with some teacher friends. We had a lot of laughs and a great time. :-)

23) Today I'm especially thankful to have heat! With it being about 30 degrees today, I'm very glad that we have that luxury. And congrats to my cyster, Megan, who ran her first 5K today in this terrible weather!! So proud of you! :)

Saturday, November 16, 2013

Thankful November, Week 3

Each day of November, I'm going to take some time to recognize at least one thing I'm thankful for, no matter how big or small, then I'll post them at the end of the week. Go here for the first week, and here for the second week.

9) I'm thankful for understanding friends. Today, we spent the day with our friend, Tony because he lives about five minutes from where we're doing our CLIMB tomorrow. This evening, another one of our friends, Chris, came up to hang out with us, too. The guys decided they wanted to go out to an arcade bar, and I decided I was going to call it a night - and I didn't get any crap from them this time! They understood that I wasn't feeling well and wanted to catch up on my sleep, especially before a big day and I just really appreciate that! I also love that Tony was asking me all about how I've been doing and everything I've been taking, like my Kalydeco. He works as an athletic trainer at a high school and is very health-conscious (he's completed TWO Iron Man events!). We compared digestive enzymes (mine are way more powerful!) and he asked lots of questions about how K has been helping me. I love educating others more about my CF, and I appreciate that he cares enough to ask. And thank you, Chris, for letting me sleep! :)

10) "I'm alive and well." Today, Tim and I completed the CF CLIMB! And although I'm in the middle of a nasty cold/sickness/infection - whatever it is - I was reminded that I'm still doing well. I'm still well enough to complete a physical challenge such as climbing 58 flights of stairs. I'm very thankful to be as healthy as I am today. Today was also a huge reminder for how much exercise is good for my health. I'm really hoping I can get back into an exercising routine to make myself even healthier. :)
I heard this song on the radio a week or so ago and I can't get enough of it! Here's my favorite part:

"But not me, I'm alive
And today you know that's good enough for me
Breathin' in and out's a blessin' can't you see
Today's the first day of the rest of my life
And I'm alive, and well.
I'm alive, and well." 
~I'm Alive by Kenny Chesney & Dave Matthews~

11) Today I'm thankful for motivation, especially from my CF friends! After posting about our CLIMB, I got a lot of awesome feedback, and it made me want to do more. I miss the feeling of setting a fitness goal and the best part - the feeling I get after I accomplish it. So today I set a new goal and that's to run another 5K. But not just any 5K - this one is the Rock CF River (half marathon or) 5K in Michigan, put on by a great motivator, and fellow CFer, named Emily Schaller. Today I learned that several CFers that I've 'met' online from around the country are all coming out to either run the Half or 5K, and I'd love to join them. So my motivation for this winter is to get my butt back in shape for this race at the end of March! :-)

12) I'm thankful for the Cystic Fibrosis Foundation and anyone and everyone who has ever donated to them! Without your monetary support, I would not have many of the medications that I take today. Nearly 90 cents of every dollar donated to the CFF goes directly to CF research and education. That research (which is extremely expensive) is for all the new medications that go to years of clinical trials before becoming available to patients. Read this article to learn much more about the CFF and how far they've come - it's a great read! THANK YOU, THANK YOU, THANK YOU!!!! You're helping to keep the CF community alive! :-)

13) I'm thankful for a HUSKIE victory tonight!!! GO NIU!!

14) I'm thankful for the roof over my head! I love our new house and we're very lucky to be able to own our own home. It's an awesome feeling to finally not be renting anymore, and to be able to do whatever we want to our house.

15) Tonight, I'm thankful for YOU, that's right, you, reading this blog right now! Without you (the readers), there'd be absolutely no point in blogging. I love knowing that people care to read what I have to say, whether it's about my CF, teaching, or just life in general. I hope that with this blog, someone somewhere is connecting with what I have to say and not feeling like they're the only one out there. I hope that someone somewhere is learning about CF through this blog. I hope that someone has benefited/gotten some advice from any of my posts. Just like the CF Living videos, I do this blog not only to raise awareness about what CF is and how I deal with it, but also to hopefully be that resource that someone needs. I was there once and I was looking for something like this - to tell me I'm not going through this crazy thing called cystic fibrosis alone - and I hope that I can be that for someone else. :)

16) Today, I'm thankful for weekends. Tim and I are enjoying a nice relaxing day filled with errands this morning, a late lunch, and a lovely nap on the couch! It's really nice not having anything planned this weekend, finally, and to be able to spend some relaxing, stress-free time with my husband. :-)

Monday, November 11, 2013

It Got Me

I've been bit by the exercise bug once again! Yesterday's climb has motivated me to keep exercising! So this morning I went out for my first run (aka: slow jog) since Brett's Run in June. I went about a mile and a half, switching between slowly jogging and walking while hacking up a lung. It felt wonderful!

Here's my next goal: 
The Rock CF Rivers Half Marathon, 5K Run/Walk in Grosse Ile, Michigan (I'll be doing the 5K, not the half).

This race is put together by the lovely Emily Schaller who created the Rock CF Foundation (where I got the awesome shirt I wore during the CLIMB yesterday) and also has CF. She's been one of many CF motivators for me and I'd LOVE to run a CF fundraising specific 5K, and meet her! I'm looking for anyone who's willing to make the road trip with me. It's not until March 30th, so we've all got time to prepare and train. I'm serious. I want to go! And, if you have CF, you can sign up for free. :) There are going to be people coming from all over the country to run this and I'd love to be a part of that - now who's with me?!

Sunday, November 10, 2013


Today Tim & I completed our first CF CLIMB in Chicago! We climbed 58 flights, or 1,392 stairs! Since I've been feeling pretty crappy over the past couple days (the worst I've felt in a while), I wasn't sure how I was going to do, but my goal was to finish in under thirty minutes (well, really just to finish).
When we lined up to start, there were three groups: Elite (projected finish time under 12 minutes), Competitive (under 20 minutes) and Recreational. I was definitely trying to get in the recreational area, but we all kind of lumped together. They had us start at the bottom, one at a time, spread out by about 5 seconds each. While Tim and I were in line, we were trying to figure out a strategy of how to pace ourselves - Do we run up the stairs? One at a time? Or every other? We had no idea what to expect! I started off slow, just walking up the steps, then started to do every other. Once I hit the sixth-seventh floors, I was completely exhausted!! My legs were burning, I was breathing very heavily - I had no idea how I was going to make it up another 50 flights! But I just kept telling myself that there was no stopping now! Every few flights, I would stop on the landing and catch my breath. At floor 22, there was a water & Gatorade station, so I stopped and got a drink. The next few flights felt fantastic after getting re-hydrated, but that didn't last too long. There was a lot of motivational self-talk! I kept reminding myself that I was there because I CAN do it, and that I was doing it for those who couldn't. It was just as much a physical challenge as a mental one for me.
Every floor was marked with a CF sign either with a fun fact, or cheering on a specific team. One of the posters in the 40s said something like, "This sounded like a good idea!" - I really liked that one! Once I got to the second rest stop, floor 43, I knew I was so close! I still kept stopping every two-three flights, and when I got to floor 55, I took a pretty quick break because I could hear people cheering above me and saying, "Congratulations! You did it!" I pushed through my painful thighs and heavy breathing to get to the top! I cannot wait to see the picture they took of me going across the finish -- I'm sure it was a mixture of joy, exhaustion and pride! As soon as I got up there, I saw Tim (completely red in the face and looking exhausted too!). I grabbed a bottle of water and we walked around the floor for a few minutes, finding a warehouse looking room to cool off in with other climbers. I was so proud of Tim when he told me that he finished in 15 minutes (the guy told him as he crossed the finish), so I was curious what my time would be. Tim also told me that this was one of the "hardest things he's ever done" and I definitely had to agree with him! We caught the hot elevator ride back down to the first floor to celebrate our accomplishment! As we came off the elevator, we each received a CF CLIMB 2013 medal. :)
We hung around the 'after party' for a little while, and was able to chat with my cf buddy, Cheriz, who I met last month at the Peoria Great Strides! Her boyfriend, Andrew, completed the climb today, too! They posted our times on the wall of the room and I was anxious to see my time, hoping it was under thirty minutes. I finished with a time of 22:04! Way better than I thought I did!! Tim's official finish time was 15:09! - that's competitive quality! :-)
They had a quick awards ceremony for the team and individual who raised the most money. They also gave an award to the male and female with the fastest time. The male finished in just over 7 minutes (WHAT?!?!) and the female in just over 10 minutes!!! Holy cow, I don't know how they did it! And overall, the event raised over $100,000 for the Cystic Fibrosis Foundation!!!!! THANK YOU TO ALL WHO HELPED US REACH THAT AMOUNT!!! 

I'm really excited and proud that I was able to accomplish something like this (and I love my husband for being such a trooper and doing it with me, and totally kicking ass!), especially with how awful I've felt over the last two days. I felt AMAZING after I finished! I was breathing deeper than I have in a few days, and I've gotten a lot of nasty junk up this afternoon. This event was a HUGE reminder of how much exercise has a positive impact on my lungs. My goal is to get back into a routine of exercising again, even if it's starting off slow with our medicine ball workouts again. I'd like to keep up some in-home workouts this winter and then get back outside and running in the spring. Surprisingly, I miss it. I miss the feeling of accomplishment. I miss kicking CF's booty by challenging my body. I need to get back into it, and I will! :-)

Friday, November 8, 2013

Thankful November, Week 2

Each day of November, I'm going to take some time to recognize at least one thing I'm thankful for - no matter how big or small, then I'll post them at the end of the week. Go here to see the first week. I should also mention, that these are not in any specific order, other than one thought per day.

3) Dr. Maria Dowell, my CF doctor! She is AMAZING! I had a wonderful peds doctor, but I felt that as soon as I moved to the adult clinic, that I was finally in charge of my own health. Dr. Dowell helped me realize that I was in charge of my CF, not that CF was in charge of me. I thought there was no way to gain back lung function that I had lost. She opened my eyes to see that if I took the job of taking care of myself seriously, then I could fight back at CF, and that's exactly what I've done over the last six-seven years since being with her. Dr. Dowell gave me the kick in the ass that I very-much needed to keep myself healthy for as long as possible! She is full of information, extremely understanding, and is a great person to talk to.  I know that when I see/talk to her, she has my best interest in mind.  I look forward to my appointments with her several times a year, not just to see how my health is doing, but just to sit and talk with her. I appreciate, more than I can express in words, everything that she has done for me, and I hope that we can maintain this great relationship for years to come!

4) Speaking of amazing people, there's my husband, Tim! He's the second 'kick in the ass' that I needed to wake myself up and live my life. To be honest, the first day I met Tim, I didn't have this "oh my goodness, he's the one" feeling, and he was actually the one who pursued me (read about how we met, here). But a few months later, after talking to him one night online, I said to myself, "I'm gonna marry this guy!" and the called my best friend to make sure I wasn't going crazy! Haha!
Here we are seven years later and still as happy as can be. Tim is perfect for me. He laughs at my stupid jokes, and I laugh at his. He 'kept me in line' in college with my healthcare, which motivated me to be the healthiest version of myself, for him. He'll go along with me when I sign us up for 5Ks and stair climbs, and usually beat me. :) He puts up with my excess mucus like a champ and rarely ever complains. ;) He is supportive, a listener, understanding, open, happy, and loving....how could I ask for anything more??

5) Today, I'm going to go with music and the ability to listen to it (I think it's something we take for granted). Without my ability to hear, I'd miss out on all the beautiful and fun music that I like to listen to. There are some days where music just gets me through. Its something I enjoy listening to and singing along with, especially country music. I love that songs are powerful enough to bring me back to a specific time and place, and bring back so many memories and emotions. I love that there are different types of music and like to switch it up a bit depending on my mood. Music is good for my soul. :-)

6) I'm thankful for the opportunity to shoot the Day in the Life Videos with cfliving.com! When I was a teenager, hating and trying to deal with my CF, it was videos just like these that I was looking for! I hope that by participating in these videos, and sharing my story, someone somewhere is getting the little pick-me-up, motivation, advice and/or information that they need to keep themselves going! I never thought I'd be able to do something like this, and it was so fun making the videos! The cfliving people are the best! :-)

And if you haven't seen it yet, here's the latest video on routines & goals. I thrive on routine and schedule, although I still know how to be flexible when I have to be. Having a routine and setting goals for myself keeps me motivated and on track with all of my treatments! Just so happens that today is my 250th day of 100% compliance....haven't missed a vest or neb in 250 days!!

7) Today I'm thankful for technology. I love having my blog, Facebook page & groups, etc, to connect with family, friends and other CF patients around the world. I've met so many wonderful people who I would never have met if it wasn't for online communities and the internet. Today, I'm especially thankful for technology because I'm starting to catch a cold/virus/something, so I was able to email my doctor & nurse this morning to call in some Cipro for me. It's amazing that I'm able to get in touch with my doctor in Chicago and get the drugs I need the same day! I'm also thankful for the advice & information I get from other CFers I'm able to connect with through social media. Several suggested doing sinus rinses when catching a cold (and regularly) to help with sinuses. I bought one while at Walgreens picking up my Cipro and tried it this evening - what a WEIRD feeling! I still feel stuffed up on one side, but I'll keep at it over the next few days to see if it helps relieve my cold a bit faster. Thanks everyone for your help! :)

8) I'm grateful to have a 'recovery' day on Monday. I've got Monday off due to Veteran's Day, and I can already foresee that becoming a very lazy day. I've felt pretty crumby all day today and am looking forward to finishing up this third treatment so I can get to bed. Tomorrow we're heading up to Chicago to hang out with some friends and then we have the CF CLIMB on Sunday! Tim and I will be climbing 58 flights of stairs. My goal is to finish in under 30 minutes, and I'm really hoping this cold doesn't slow me down! I am thankful though, that I'll have Monday of to be completely lazy and get my schoolwork done in my PJs...and rest my legs!

Monday, November 4, 2013

Gets Me Every Time

I absolutely LOVE this video!!! It gets me teary and gives me the chills no matter how many times I watch it!!! And, word on the street is that there are four CF patients (a couple are obvious, like the lead wearing her purple :) ) in the video! Please pass it on! 


Saturday, November 2, 2013

Thankful November

Each day of November, I'm going to take some time to recognize at least one thing that I'm thankful for - no matter how big or small. I'll then post them at the end of the week. I've been trying to do this weekly with my "Positive Thoughts Thursday" posts, but I thought I'd try daily for the month of November. :)

1) I'm thankful for working in a building with supportive and super-fun coworkers! Today we celebrated that we reduced our number of referrals in October by about 50%! To celebrate this, we decided to do a Fear Factor Game. The students watched as the teachers completed some fun, some disgusting, and some just weird games. I used my toes to take marbles out of an ice cold bucket of water (got out 16 in a minute); cracked an unmarked egg on my forehead (mine was hardboiled, phew!); wrapped one of my students as a mummy with toilet paper (and failed miserably); ate a spoonful of "cat food" (SPAM); and finally dug "worms" out of "dirt" with my teeth (got 7 out of 8 in a minute....and sinuses full of pudding!). Oh, and I used a "lifeline" to have a student eat a spoonful of blended Burger King (fries, a burger, coke, and a Kit-Kat! Gross!! Poor kid spit it out! Haha!). I ended up in third place out of the nine primary teachers! I just love that I'm able to work in such a fun environment everyday! For those of you who don't love your job, you're missing out!!!!

2) Oh man, today's item is hard to choose...I'm going to have to lump it into 'in-laws' today. We had a wonderful day helping Tim's sister's family move. We had lots of laughs and good conversation. I am so lucky and thankful to call them my family, too.

Side note: I also learned how annoying assembling a crib is today! Tim's great aunt Shirley & I assembled, then took apart, then reassembled (to make sure we used ALL the screws that time!) the crib for our youngest nephew, Liam. I now understand why in movies/tv shows/commercials they always show people frustrated over assembling a crib...I get it now!! Haha!

Thursday, October 24, 2013

First Post-Kalydeco Clinic

Today I had my regular CF clinic appointment, and tomorrow marks the 8th week I've been on Kalydeco. Of course I've been looking forward to this appointment pretty much since I started on Kalydeco just because I wanted to see (in numbers) the change that was happening with my weight and lung function. 

Overall, I haven't noticed a huge transformation in my lungs, but I have noticed that I'm starting to get my CF belly back a little bit, as well as some "love handles" - but then again I thought I was noticing these things the before my last appointment, in July, and I ended up losing a half pound, so I wasn't getting my hopes up today. Over the last eight weeks, I've coughed up a ton of mucus. There are days where I feel it's endless, but then there are days where I barely notice that I'm coughing at all. One thing that I have noticed though, is that when I am coughing this stuff out, it's from deep down in my lungs. I've coughed up some funky colored stuff over the past couple months, which I'm guessing was just old, deep mucus. 

As far as my weight and eating habits, I've started drinking two Ensure Plus's per day - one with breakfast (and my first K of the day) and one with lunch at work to replace those calories I'm burning while working. If I have both per day, that's an extra 700 calories and 24 grams of fat added to my already high-calorie and peanut butter-filled diet. Speaking of peanut butter, I've been on this crazy PB & J kick lately and I eat at least one or two pb&j sandwiches (or on toast) per day. 

So anyway, back to my appointment. Due to the changes I mentioned above, I was hoping that my weight would be at least 111 lbs (3 more pounds than what I weighed in July), and my FEV1 somewhere in the 80s. I knew that I shouldn't set my expectations too high 1)because I've only been on K for two months and 2) because I don't want to be disappointed in my body if I don't get those numbers because I've been feeling great and doing everything I'm supposed to do.

Of course I got to clinic early, and it was packed. At one point, there were at least 4 other CF patients in the waiting room -which is totally against proper infection control...but that's for another blog- (they weren't 'labeled', I just think that I have pretty good CF radar), and I was the only one wearing a mask! Either way, it was packed. So I kept myself occupied with my phone and my book for the hour or so that I waited to be called back to my own room. The first thing they do (usually) at my clinic is weight, vitals, PFTs, then I usually sit forever until a doctor or nurse comes in. Today, she weighed me first and I was a whopping 114.8!!! I totally said, "YES!" when I saw that on the scale, haha! That's up SIX pounds since July and I'm very comfortable with that. I think this is a good, healthy weight for me, but I'm not going to stop what I'm doing with the Ensures & pb&j's. A little extra weight wouldn't be a bad thing for me.

After being weighed, I went into my room and had my O2, blood pressure and temperature checked. My O2 was 97%, blood pressure was a little elevated and my temp was 99.3. She asked me if I was nervous, and I said no, I was just anxious to get my PFTs done and that I was a little hot (I was sweating!). Then I sat in the room, for probably 10-15 minutes before my new nurse came in. She introduced herslef and we chatted for a little bit. Then she asked me about my lung function, she sounded just as anxious about my results as I was, and I told her that I was still waiting to get my PFTs done. She was like, Oh man, let's get going on that! How exciting! Oh, but no pressure! Haha!

Finally the RT (the good one, Patti!) came in with the PFT machine. I pulled my hair back and stood up anxiously while she got the machine ready. She, too, was so excited for me to do my test because she wanted to see what my numbers looked like after being on Kalydeco. I did the first test, with her wonderful encouragement, and blew an FEV1 of 82% (5% higher than July!). Honestly, I was a little disappointed with that number, but I thought to myself at least it went up & it's in the 80s. So I did two more tests - the second test was 82 again, and the last was 80. So, my overall lung function as increased by 5% since July. Who can complain about that?? The best part - my small airway function...this is something that my doctor looked at a couple years ago and decided to put me on Advair to try to increase. And after being on Advair, my small airway function went up to 96% in August 2011. The over the next couple years, it followed this trend = 85, 88, 86, 78, and finally 72 in July. Today, my small airway function was 90%! That's an 18% increase!!! And I can feel that! When I take deep breaths, I'm not as wheezing and crackly as I've been in the past! :-)

My doctor is really looking forward to see what my cultures look like to see if the K is affecting that. She also mentioned that she's looking forward to seeing what happens at my next appointment and that maybe we can talk about backing off of anything....that would be fantastic, but we'll see - not getting my hopes up on that one. And finally, in another month, I'll get my liver enzymes checked to make sure that's reacting appropriately with the Kalydeco, too. Needless to say, everyone was very pleased with my results, including myself! For only being on Kalydeco for two months and to notice these changes already, really makes me happy! I'm going to keep doing what I'm doing, plus I'm going to try to increase my exercise (I've been completely slacking) since that made a great impact on my lung function...it can only go up from here, right?! :-)

Sunday, October 20, 2013


Call us crazy, but Tim and I just signed up (and paid) to climb 58 flights of stairs on a Sunday morning! 

Why, you might ask?? Well to support the Cystic Fibrosis Foundation, of course!!! I received an email from the Foundation the other day informing me about this event and it piqued my interest. It's downtown Chicago, so I thought I'd get more of my family to sign up (not one yet....they must be too scared ;) ) and I've been exploring lots of Great Strides events this year, what's one more fundraiser for the year? Plus, they were having a promotion where it was only $10 to sign up instead of the typical $45 - can't pass up a deal like that! It's going to be a physical challenge, but I won't let me CF stop me on this one.

And with the new CF regulations & guidelines, more than one CF patient can attend indoor events sponsored by the CF Foundation at their own risk. Here's the disclosure from the event's website:

B. CEPACIA AND INFECTION CONTROL POLICYBecause of risks to people with cystic fibrosis (CF), only one person with CF may be invited. Also,individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex shall not attend any Foundation events/meetings. These requirements are because CF germs can be passed between individuals who have CF. Some germs in a person with CF can cause serious respiratory illness and, in some patients, may lead to death. CF germs are not a risk for otherwise healthy individuals.

Despite this policy, individuals with CF might choose to attend events or meetings without informing the CF Foundation or without the Foundation's knowledge. If so, they do so at their own risk. The Foundation accepts no responsibility for any risk to health involved in attendance, or in any social contact between persons with CF. For more information, please visit www.cff.org

I'm glad that they're not enforcing the strict regulations of only one CFer attending an indoor event. I feel like a lot of people in the CF community were really turned off by this, and I think it's fair that we're able to make our own decisions on things like this. I understand they're doing it to keep us safe, and also to cover themselves, but I think that CF adults should be responsible and mature enough to make their own decisions. With that said, I am aware that at least one other CF patient will be there, so I will wear my pin proudly to identify myself and be sure to keep my distance.

Finally, my goal for this event is to raise at least $200. If you'd like to donate to my CF Climb, please let me know. My page hasn't been set up yet on the CFF website, but as soon as it is, I'll post it on here. Right now, I'm just collecting any cash or check (made out to the Cystic Fibrosis Foundation) donations to submit on the morning of the Climb.....which is only three weeks away! I better get these legs into shape!!!!!

Thursday, October 17, 2013

Positive Thoughts Thursday: Quotes

I have a board on Pinterest called "Quotes & Cute Things", which is where these all came from. I enjoy going through that board occasionally and reading these happy thoughts, so I wanted to share them with you.

Thursday, October 10, 2013

Positive Thoughts Thursday: Health & Fall Fun

I've been totally slacking on blog posts lately, but honestly there hasn't been much going on. I'm glad that several of my other blogger friends do their "Thankful Thursday" posts each week because it reminds be to get back on here and appreciate the little (and big) things in life. :)

  • Today I'm thankful for good health. I've been on Kalydeco now for six weeks. And just now, over the past couple days, I feel like I'm finally slowing down with my mucus movement. Over the last six weeks, I experienced some serious mucus movement in my lungs, especially deep down in there. Things started moving around the first few weeks I was on Kalydeco, then I got a cold which tightened my lungs for about a week. And then after that cold, I felt like I was constantly coughing my brains out! I'm pretty sure I've coughed up every color of the rainbow mucus (except maybe blue/purple...) and I've gotten a LOT of stuff out. Over the past couple days, I feel like I've finally been able to take a good, nice deep breath without coughing up a chunk of my lung. 
  • Related to the above post - I'm really looking forward to my CF appointment coming up soon. I'm very anxious to know what my FEV1 is, especially now since I feel like my mucus production is slowing down. I'm also curious to see if my weight has gone up. Since starting Kalydeco, I've been having at least one, usually two, Ensure Plus's each day which is an extra 350 calories each. I hope K really helps me in the weight-gain department.
  • Fall weather! I am not a fan of the heat. I enjoy sunny & 75 (Joe Nichols, anyone?). It's so much more comfortable to teach in the cooler weather. I love having the windows open all day and getting fresh air in the house. And of course, all the fall fun & fall food (aka: apple donuts!)! This weekend we're hanging out with Tim's aunt & uncle, and his sister, her husband and their two little guys! We're going to the pumpkin patch/apple orchard on Saturday -- always a good time! :)  
  • Last weekend, Tim and I walked in (my third) our second Great Strides of the year. I was asked to speak at this one which I enjoy doing. I like to share my story with others, especially parents of little ones with CF to give them hope about their child's future. I was also able to meet one of my blogging cysters, Cheriz - who's now in the hospital for a tune-up- hope you start feeling better soon!! Here are some pictures from the event.

  • Oh, and how could I forget?! Yesterday, Tim and I celebrated our third wedding anniversary! :-) Today marks our 7th anniversary of being together, total - seven years ago today, Tim asked me to be his girlfriend while eating lunch in the "Dog-Pound Deli". This year, not only were we husband and wife, but we also became "homeowners"! I'm looking forward to what this next year (and MANY more) has in store for us! I love you, Tim!!!! 

Tuesday, October 1, 2013

I'm Still Here!

I'm sorry for the lack of posts lately. The day I was planning on typing up something, I turned my laptop on to a very dark screen and a high pitch squealing noise. Of course, I texted our friend Chris, who's an HP rep and asked him what I could do, and he just suggested turning it off and that there could be several things going on...great. Thank goodness I recently backed everything up onto an external hard drive! I'm now using a desktop computer that we bought several years ago and then never ended up using for whatever reason. (I used to always give Tim crap about still having it, telling him we should have sold it....good thing we didn't!)

Right now I'm finishing up with my first cold of the season...already! It started last Monday as this awful stuffy nose and sneezing all day, so I thought at first it could just be allergies...of course not. It slowly moved into my chest, but it was different this time. I had a tight chest for a couple days and I was only coughing up yellow or clear mucus (when I was able to get anything up). I was so excited because I thought I was going to have a normal, "non-CFer" cold. Well then Sunday morning I woke up and my chest was much more open than the previous days. Thanks to good ol' hypertonic saline (the best, right, John?!), that morning I was stirring things up deep down in my lungs. So for the past couple days I've been working really hard to get all of this really deep, thick stuff that had been stuck down in my lungs when they were too tight to get up anything. Other than a rattly cough, I've been feeling fine. I still have my appetite and energy, so I think in a couple more days I'll be back to normal.

In other news, Tim and I will be walking in another Great Strides this Saturday. I don't have a big team signed up because I haven't promoted it too much, just because it's not super close and I just wanted to check it out. I think its fun to go to other Great Strides walks to get ideas and see what they do. This one on Saturday should be fun because I might be able to actually meet one of my blogger friends, Cheriz!

Oh, I started my second bottle of Kalydeco this week! I've now been on it for a month and one day. I can't say that I have been noticing any major changes to my body, but I can tell you that I feel like I've been eating more. I have to take the Kalydeco with fat, so typically I take it with my breakfast and dinner, but sometimes that just doesn't happen, so I have to take it with a fatty snack. I've also been having two Ensure Plus's a day, one with breakfast (and my morning K dose) and one with lunch everyday at work - that's an extra 700 calories per day. I'm really hoping that's been helping with weight-gain. I can't tell right now if I've gained anything, and we don't own a scale because I'd weigh myself all the time, so I'll just have to wait and see at my next clinic appointment which is this month. I'm really hoping to see an increase in lung function, of course, but I'm actually looking forward to seeing my weight, too.

Friday, September 20, 2013

A Day in the Life: Chapter Two

Yay! Chapter two is finally out! This chapter focuses on my "Work Life" as a (kindergarten) teacher. I really want to show others with CF, and especially parents to little ones with CF, that having a "normal" life is absolutely possible if you take care of yourself! I'm not saying I've always been the best at that, but once I moved away, went to college and met Tim, then things started looking up for me and that motivation started to come out to take care of myself.

I've always wanted to teach, and I was not going to let CF get in the way of that. Sure, I expose myself to their nasty, germy little bodies, but so what? In a weird way, it kind of motivates me to keep myself super healthy so that I'm not allowing their germs/colds to get me down. I do take precautions, like washing my hands, but I'm not a germ-a-phobe, so that probably helps. Have I been sneezed on by a student - more than once. Same with being coughed on and spit on (from talking, not anger!). I can't put myself in a bubble because I have CF. Teaching is so rewarding. I am impacting the life of a human being - encouraging them to grow, learn and become independent little people. Watching them grow and learn throughout the school year is an amazing thing. And the fact that I get to do that with a new group of 20-something kids every year is awesome!!
I'm just so happy that I pursued my dream of being an educator. Yes, having CF and teaching is sometimes difficult. I've been struggling with my weight since I started (teaching burns LOTS of calories!), and I've caught a couple colds, having to wake up extra early before work everyday to do treatments...but I've never let it get in the way of my job performance. Even if I'm tired, or extra mucusy for a day, I still go into my classroom and give those kids everything I've got because I'm there for them. This is the career path I chose, I wouldn't change it for the world, and I'm going to do it to the best of my ability for as long as I possibly can.

So for the parents out there with children with CF - don't keep them in a bubble. Show them how to take care of themselves and live a normal life, finding that balance is possible. Treat them like you would any other child. Encourage them to pursue their dreams. Don't let CF stop them from anything.

Thursday, September 19, 2013

Positive Thoughts Thursday

No matter what's going on in your life, there's always something positive you can find! I challenge you today to try to think of at least one positive thing going on in your life right now! Feel free to share below in the comments section. :)

  • I seriously have the best in-laws! :) We had our annual camping weekend this past weekend and it was so fun and relaxing, as always. We enjoyed each other's company, hung out, did some fishing (I even caught a fish!), cooked hot dogs over the fire, roasted s'mores...the whole nine yards. It's always a good time when we all get together.
  • I got my first refill call for Kalydeco yesterday. It's weird to think that I've been on it for three weeks now. And although I haven't noticed the "huge" change that some patients have within the first few weeks, I'm excited at the long-term effects this drug is going to have on my body. 
  • I'm so happy that it's been cooling off! Aside from today when it's supposed to be close to 90 again, it's been feeling like fall lately and I love it. We're planning a trip to an apple orchard with some family in a few weeks and I'm looking forward to that! The cool temperatures also make for a much happier and relaxed (and less stinky) teacher!!! I'd take 70 degrees any day - it's the perfect teaching temperature! :)
And finally, I saw this on pinterest and thought it was pretty funny: 
If only it was that easy!! But maybe, just maybe, it won't be as disgusting after being on K for a while!

Wednesday, September 11, 2013

How I'm Feeling

Today counts as day 13 of Kalydeco, can't believe tomorrow will be two weeks already. This morning I am FULL of mucus and my dixie cup is filling up quickly as I'm finishing up my treatments right now. I feel like I'm getting a lot of stuff up, but this morning it feels like it's really deep down in there and it's taking a lot of effort to get it out each time I cough - it's literally making me sweat!
Speaking of sweat, it's been unusually hot for this time of year and our school does not have air conditioning, so it's been super disgusting at work. Yesterday, we dismissed the students an hour early due to the heat, but today we're going back to a full day even though it's going to be the same temperature as yesterday. Yesterday I had a continuous headache throughout the day, but I really contribute that to the heat, not Kalydeco. Also, Monday and Tuesday, I had several very deep, mucusy coughs throughout the day. I feel like I'm really clearing my lungs over the past few days, more so than I was when I first started Kalydeco.

*Update from evening treatment - I had several deep, hard-to-get-up coughs this morning at work, but that definitely slowed down this afternoon. My bottom of my cup is just barely filled after my second treatment today, but that's not unusual for me.

Monday, September 9, 2013

Feel the Love

This weekend, Tim and I attended the wedding of our very good friends, Jessie & Jeremy. I have never seen more love and happiness between a couple, it was just amazing to sense their positive energy and love for each other on Saturday. I met Jessie when I was a junior in college, in the education program. I noticed that she was wearing a Great Strides shirt and thought to myself, "You don't wear a Great Strides shirt, unless you know someone with CF. I wonder how she knows about CF?" So I went right up to her and asked her about it and she told me that her boyfriend, Jeremy had CF. Since then, we've been great friends! It's amazing how much more there is to talk about with someone when CF is a common factor. Plus, it was so interesting to me to see the "CF spouse" side of things in their relationship.

While Jessie and I were doing our student teaching our senior year of college, we actually rented apartments in the same building, right across the hall from one another. It was awesome to be able to see her and Jeremy all the time and hang out! Jessie stood up in my wedding as a bridesmaid when I got married right after we graduated college, and then of course we both went our separate ways to become teachers. Throughout the years after college, we kept in touch and saw each other not as much as we'd like to, but that's what happens in life. I was so excited when I found out they were engaged!

Jessie and Jeremy have been through some hard times together since sometimes Jeremy isn't in the best of health, but she loves him to death and sticks by his side anytime he has to go into the hospital for a tune-up, or is just having a rough day. Jeremy is a great guy and the way he adoringly looks at Jessie is just the sweetest thing I've ever seen. The same was true at their wedding this weekend. Jeremy is currently on oxygen 24/7, but that didn't stop him from dancing with his beautiful bride (MUCH better than many couples during their first dance), and Jessie was right there with him all night to help him out if he needed anything. Seriously, the love between these two is amazing. Here are a couple cute pictures from the night:

Jeremy saying his vows
Jessie saying her vows
Ring vows they said together - absolutely adorable!
First dance!

Sunday, September 8, 2013

Kalydeco Days 5 - 10

Day 5 (Tuesday): I'm still not noticing too much of a change, and I know it's still pretty early. I feel like I'm coughing the same amount that I typically do, although usually when I cough now it's productive instead of just a 'throat-clearing' cough. That's about it. :-)

Day 6 (Wednesday): I noticed today that I was interrupted a couple times during my teaching to cough, and I found myself clearing my throat more often. Not a fan of coughing while teaching because it's usually productive and I have to swallow it, but at least I know things are still moving in there.

Day 7 (Thursday) - Day 10 (Sunday): Thursday evening I had another blood-in-mucus problem, so I laid off of my hypertonic saline Friday morning so I didn't irritate my lungs anymore and my mucus was back to normal (no blood) by my evening treatment on Friday. Since then though, I've been coughing up a lot of nasty stuff. :) This morning and throughout today, my mucus has been a grayish-greenish color so I think I'm getting up a lot of older junk that's been down there a while.
And, if you want me to be completely honest, I have to tell you the best part which is probably way too much information: Tim and I went out of town for the weekend for our friends' wedding (I'll post about that later) and on the way in the car, I farted. As Tim reached to roll down the window, I said, "Wait, I don't smell anything!" Of course he didn't believe me, so like a bunch of weirdos, we sat and waited another minute to verify. Believe it or not, there was no smell! I said to Tim, "If my farts don't stink anymore, Kalydeco really is a miracle!" (If you don't know me, or any other person with CF, you're probably wondering why on Earth I would share this on my blog, but you don't understand how amazing this is!) Later in the car, the same thing happened and I said, "It really IS a miracle!" Haha!
I wouldn't say that my gas has decreased (anymore from when it did when I started taking Probiotics - the other miracle), but the fact that they don't smell is just amazing to me! We'll see if it keeps up, or if it was just a fluke for the day, but even if it helps a little, I'll definitely be a happier lady! :)

Thursday, September 5, 2013

Positive Thoughts Thursday: K, Tim and Cysters & Fibros

To start off this blog today, I googled "thankful quotes" and these caught my eye:

"I'm thankful for laughter, except when milk comes out of my nose." ~Woody Allen

"Some people are always grumbling that roses have thorns; I am thankful that thorns have roses." ~Alphonse Karr

"I'm thankful to be breathing, on this side of the grass. Whatever comes, comes." ~Ron Perlman
  • I'm so happy, and lucky, to be able to say that I've been on Kalydeco for a week now! I'm still journaling how I've been feeling day to day, but I'll post several days at a time now instead of one each day, just because the changes are so minor. Overall, I'm not feeling too different from before I started except for the random rattly chest & thick mucus fits/moments throughout my day. And I really do mean random - they come out of no where!
  • I'm so thankful today, and everyday, for an amazing, hard-working husband! Since we bought our house a little over a month ago, he has been working so hard on it! Yes, I try to help him with projects, but home improvement isn't really 'my thing'. I'm the 'deal with the people' & accountant of our relationship, haha! 
  • I love having access to the internet. I have met so many amazing people through the online CF community, I consider some of them to be my friends although we've never met in person. It's such an amazing experience to be able to talk and get to know someone who understands what you're going through, when you would have probably never have met that person if it wasn't for the internet. :-)

Monday, September 2, 2013

Kalydeco: Day 4 & Home Ownership

There's not much to report today. I actually feel quite normal. Every once in a while my chest gets rattly and I'll cough out some thick, green mucus, but other than that I'm not feeling much of a difference. I'm really hoping it'll help me get back to a healthier weight, as well as help my lung function. I feel like I've been eating more the past few days because I'm making sure I'm getting the proper amount of fat with the Kalydeco, so I hope that weight starts to stick.

In other news, I've been super busy with the beginning of the school year. This past week we actually ended up having early dismissal, an hour earlier than usual, because of the extreme heat and lack of air conditioning at our school. It was really disgusting and I probably lost a pound or two just in sweat over the few days! I did pretty good about keeping myself hydrated though, and I drank plenty of Gatorade each day while at work.

On Saturday, Tim and I had our housewarming party with a lot of his family, my parents, and friends. It was so fun to get everyone together at our house this time! And I'm SUPER happy because Tim's sister, her husband and their two sons have finally moved back to Illinois! They're now only an hour away, so I'm really hoping that means we'll get to see them much more often.

Today, Tim and I spent the entire afternoon, about four hours, doing more landscaping in our front yard and along the side of the house. I'm really proud of the amount of work that we got accomplished together today and I love the way it looks -- there's something different, and way better, about doing work on a house you own! Tim also has been working his butt off the last few weeks to update our bathroom. We finished just in time for our party on Saturday....literally, just in time - we painted it on Friday night! :)
This is what our house looked like when we bought it.

A few weeks ago we ripped out all of the weeds & bushes and
replanted new plants. We also got all of the plants on the steps
from our brother-in-law after the Farm Progress Show was over.
This is what it looked like when we started today.
This is what it looks like after we finished for today. We dug up the
grass and laid pavers all along the front and side of the house.
The we arranged the plants where we'd like to plant them. We'll
also be adding some mulch after we plant everything.

Here's what the bathroom looked like
when we purchased our home.
Here's what it looks like today! :) New tile floor,
new tile around shower, new window & paint.

Sunday, September 1, 2013

Kalydeco: Day 3

Today I haven't felt much of a difference than I usually feel from day to day. I have noticed that I'm still coughing, but it's not all day long (and it hasn't been since I've started K). The coughing comes in spurts throughout the day (I've noticed it the most a couple hours after I do my morning treatment) and when it comes, it's lots of thick, sticky and green gobs coming out. There was only one gob that came out today that had tiny specks of red, so I'm glad that's getting better. I'll go back to doing my full HTS neb tomorrow with my morning treatment.
Today's evening dose posed a new problem thing to keep in the back of my mind all the time because I've never had to take a regular evening medication (aside from Cipro). Tim and I hopped in the car around 6:15 to head to Menards and as we turned down the first block after our house, I said to Tim, "Oh no, we better be home by 7:00 because I have to take my Kalydeco then." Well, we both knew that wasn't going to happen because Menards is about 15 minutes away and that would leave us 20 minutes to shop - no way! So I decided to just go back around the block to head home and grab it. On the way back to our house I asked Tim to check my purse to see if I already had a protein bar in there, or if I should grab that out of the house, too. He found one in my purse and told me it was 12 grams of fat - perfect! When we got back home, I ran in and grabbed the bottle of Kalydeco and back off to Mendards we went. I felt a little weird eating a protein bar while walking through the store, but whatever. I think I'm going to have to keep my purse well-stocked with protein bars and/or peanuts. And also a cyster recommended keeping two extra pills in my purse for occasions just like this - great idea!

**And finally, I wanted to share a link to this great article from Discover magazine that the Cystic Fibrosis Foundation sent me the link to - it's an awesome, informative read! It discusses how/when scientists discovered the CFTR gene in the 1980s and how cystic fibrosis research has progressed since then. It's amazing to learn how much they've been working on creating medications like Kalydeco and how it's all been funded throughout the years. It makes me appreciate the jobs of researches & scientists, and everyone's fundraising efforts even more!!!

*Oh yeah, and I forgot to add that I've had a slight headache today, off and on. I've also been having some stomach pains and bloating today - that could be due to the amount of not-the-healthiest food I've been eating yesterday and today, so we'll see how that goes tomorrow.

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 how...so 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 cup...it'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!! :-)