Martinis and Movies

This weekend was amazing! I got the opportunity to speak at a Cystic Fibrosis Foundation event. It's called Martinis and Movies, and it is a black tie event. It was beautiful and so much fun to dress up. That's not something I normally get to do. I got a dress and shoes and even curled my hair! If you know me at all, you know that last part is a pretty big deal.

My husband, Eldon and I at Martinis and Movies.

The program started with this video:

Me giving my speech.

Immediately following the video, I began speaking. I introduced myself and gave a very short little bit about myself. I pointed out that like Keith and Kennedy in the video, I am still waiting on a miracle. I also got to share the amazing news about Vertex's new drug combination that will benefit me. To refresh your memory of that story, just click here. My part ended with me reminding everyone that I am a face of CF who lives here in this community.


My little speech was followed by a fellow CFer who is on Kalydeco, and she spoke a little about how it has changed her life. Finally, the best friend of a CFer who just received a lung transplant spoke and asked for everyone to make a "bid for a cure." From the donations alone, almost $14,000 was raised! The whole event raised over $50,000! I'd say that's a successful evening! I am so thankful that I got to be a part of such a wonderful event.

My adorable parents all dressed up.

Amazing Things

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Lately, I feel like life has been treating me ridiculously well! I fell so blessed! To begin with, I am on day 10 of being 100% compliant with my treatments. I’m also working out as much as I can at the gym and at home. I’m making sure to do a little bit of everything including cardio and strength. I’m on the road to higher weight and lung function!

Yesterday, at work, I had my final evaluation. It was unannounced and slightly stressful, but I am finished with evaluations for the rest of the year! We have two unannounced and two announced throughout the year, and I am so thankful to have all of my evaluations for my first year of teaching behind me!

Finally, Vertex (the company that gave us Kalydeco), announced yesterday they will be starting Phase 3 of their trials of Kalydeco and VX-809 together. The trials are being done with cystic fibrosis patients who have two copies of the DF508 mutation (the most common mutation in those of us with disease). I just happen to have the double copy of that mutation! They have said that if everything goes well, they hope to send it to the FDA for approval in 2014! I could not be more excited about this news and what it could mean for my future as well as thousands of others with the same mutation! This is why I work so hard to raise money for the Cystic Fibrosis Foundation every year.

With all of that being said, I am starting my fundraising campaign. If you are interested in making a donation to the Cystic Fibrosis Foundation, just click on the link below. I will also be selling t-shirts once again. If you would like to order a t-shirt, just let me know what size you need. I charge $20 a shirt. The more that are ordered, the cheaper they are. So any extra money I get from the shirt orders, will go straight to the Cystic Fibrosis Foundation. The shirts come in sizes YXS to 3XL.

 If you would like to read more about the Vertex announcement, just click on the links below.

Vertex Press Release

Cystic Fibrosis Foundation

It's Complicated

I had to wear a mask today at clinic because
they are trying to keep all of the cystic
 fibrosis patients healthy. They don't
want the flu and other germs to each other.

I will begin this post by acknowledging how dumb I am. The worst part about this clinic visit was realizing that truth. My PFT that I did January 18th was not as positive as I though it was. I thought my FEV1 was 54%. It turns out that I was looking at the wrong column like an amateur. My FEV1 was actually 45%. That's a big bummer, but there is some good news as well. Today, my FEV1 was at 50%. I didn't make it to my goal of 60%, but I also started out lower than I had thought. At first, I was upset and slightly frustrated, but it all boils down to the fact that my numbers went up. That's all I can ask for.

Now, if you recall, on January 18th, I was also weighed. I was down to 106 pounds which is the lowest I've been since probably high school. Today, I was up to 113 pounds. My doctor was very happy to see that, but she still wants me to keep gaining. I need to put on at least 7 more pounds which is very doable.

The best part of the whole clinic visit was my conversation with my doctor about the future and my desire to have a child. We talked for a while about it, but long story short, she said there is no reason I can't have a healthy, normal pregnancy. That was music to my ears! Eldon and I are not quite ready for that step yet, but it was so nice to hear that I have my doctor's support when we do decide to try.

Moving on to my plans for the next few months... My next clinic appointment is May 29th. I have decided not to set an actual number goal because my doctor feels that 50% may be my new baseline meaning that it might not go up much more. I still would like to make it back to 60%, but I have accepted the possibility that it might not happen. I'm still going to fight for every little bit of lung function I can get though. I have gotten on the workout train, and I have no intentions of getting off. I'm also setting the goal for myself to be 100% compliant with all of my medications and treatments. I'm on day 3 of that! :) You've got to start somewhere.

In the fundraising world, there are a lot of exciting things happening. I am the chair person for the Great Strides walk in Knoxville this year. Even more nerve wracking than that, I will be speaking at a black tie event for cystic fibrosis next week. It's called Martinis and Movies, and I am very excited about it. I got to buy a beautiful dress and shoes to wear for it! What girl doesn't love to do that?

So overall, today may have started out frustrating, but I am so excited for what is to come. I believe that things are going to continue to improve!

Happy Wednesday, everybody!

Taking Steps to Reach My Goals

As many of you already know, I have set some high goals for my lung function in the coming months. I'm shooting for it to be back up to 60% by February 20 which is my next clinic appointment. Then, three months later, at my next clinic appointment, I will hopefully be at 70%. To meet those goals, I will be doing everything in my power to help my PFT numbers go up. I will be staying compliant with my treatments and working out regularly. I have already signed up for two 5K's this spring.

These goals and this plan to reach them is going to be very difficult for me. I have always had a hard time staying completely compliant and staying motivated to workout. Luckily, I am surrounded by people who want to see me succeed. I've started running/walking with a couple of people from work, and my husband is always getting everything ready for my breathing treatments. That way, all I have to do is the treatment. :) My friends and family are always checking on me and making sure that I'm taking care of myself.

These are notes that a co-worker wrote reminding me to take  care of myself. They are on my work laptop so that I see them everyday. :)

I'm so thankful for those people who care so much about me!

CF Life Take 2

Looking back at some of my old posts, I found one I wrote about what a day in my life looks like. It's amazing how much things have changed since then. I have moved, treatments have been changed, and I finally found a full-time teaching job. So I thought it would make sense to do another post about what goes on during one of my normal days.


Every weekday starts at 5:00 am. I do my first breathing treatment of the day which includes my Acapella, Albuterol, Vest, and Advair.

This is my Acapella. I blow into it five times at the beginning of each treatment. 

 During my breathing treatments, I wear my Vest for 20 minutes. The Vest inflates, and the machine that it's attached to makes the air pulsate. This causes the Vest to shake which in turn shakes me. The whole point of it is to try to loosen the thick, sticky mucus in my lungs. It causes me to cough... many times, hard enough to cough things up.

Before beginning my Vest, I also use Albuterol. I inhale two puffs using a spacer.

While I'm doing the Vest, I also do two different inhaled treatments. The first is called hypertonic saline. This is basically a salt solution that serves the same purpose as the Vest. It is to stir up everything in my lungs in order to break it up and cough it out. This usually takes around 10 minutes or so to complete.

Next I do a medicine called Pulmozyme which is supposed to help thin my thick mucus. It is also made to help get some of the mucus out of my lungs. It takes about 5-10 minutes to complete.

I finish up the treatment with Advair. I only do one puff at this time.

The top is Albuterol with the spacer. On the bottom, is Advair.

After my morning treatment, I get ready for work. I leave for work around 6:30 am, and I usually don't get home from work until 4:30 or 5:00 pm. Throughout the day, I have to take digestive enzymes every time I eat. Because the mucus in my body blocks the ducts in the pancreas, I'm not able to release the enzymes that break down food. I take six with meals and four with snacks.

The other pills in that picture are my vitamins which I take two of everyday.  The white one is Azythromicin. I take that one on Monday, Wednesday, and Friday. That little purple pill is Nexium. I have to take that because too much stomach acid can cause my digestive enzymes to not work as well.

When I get home from work, I do a workout right away. My workouts are usually between 30 minutes and an hour. Later, I do a second treatment which is the same as my morning treatment minus the Pulmozyme. When I'm sick, they ask me to do three or four treatments until I get back on my feet.

I have struggled my entire adult life with keeping to the routine. When I started college, I was fed up with it all. I decided to take my independence and put it towards not having to do my treatments. I pretty much stopped doing them all together, and I loved every minute of pretending I didn't have CF. My lung function dropped drastically while I was in college, and it wasn't until I was told by my doctor that I might need a lung transplant soon that I finally woke up. I started doing my treatments again and watched my lung function numbers rise significantly.

Even with the proof that my treatments and exercise work, I still found/find it difficult to commit the time to it. It is an everyday struggle for me which was made more difficult by having a full time job. I'm finally getting to place where I have figured out the schedule and how to make it work. It's a constant battle and work in progress.

Fundraising Tips

It is that time of year again! Around this time every year, I begin to go a little Great Strides crazy. Last year, Kayla's Krusaders was the top fundraising team at the Knoxville Great Strides walk. Some people wonder why I put so much effort into my fundraising. Others ask me what I do to successfully raise so much money. I'm going to let you in on all of the tricks. :)

I'll start off by saying that my parents set up my drive for fundraising as soon as I was diagnosed. Unlike most with cystic fibrosis, I was not diagnosed until I was six years old. My parents did not put their heads in the sand and hide. Instead, they made a decision to do everything they could to try to find a cure for me. That first year, they began participating in Great Strides and raising money. After I graduated from college, I realized that they should no longer have to be doing all of the work. It's my life they are fighting for.... I should be fighting just as hard or harder. I took the reigns of the fundraising a couple of years ago, but my parents still do a ton of work with it. We came up with a fun name for the team. Instead of just being Team Rose, we became Kayla's Krusaders.

When I think about all of the reasons I work so hard to raise money, I realize how widespread they are. The first and probably the most important is the fact that I have cystic fibrosis. If I am not willing to work towards finding a cure, how could I ask someone else to do it for me? I have plans to stick around for a while, and you better believe that I'm going to do everything in my power to  make that happen. Along those same lines, I have so many people who I owe all of my efforts to. My husband wants me around, and I know he wants to find a cure maybe even more than I do. All of my friends and family would like to see the disease defeated. When I think about others who are fighting CF, my heart goes out to the young children and their parents who are in the beginning stages of dealing with the disease. How wonderful would it be if those kids never had to hear the words that I heard a few years ago? "You might need a lung transplant soon." Even though I am still too healthy for a transplant, those words were probably the most terrifying words I have ever heard. And then, there are the people who have lost their battle with cystic fibrosis to fight for. I don't want their fights to be in vain. I could probably go on, but I won't for now.

Now, on to how I fund raise. It is something that I find very difficult to do, because I hate asking people for money. I find that's where most people give up. You just have to remind yourself that people do want to help. I remind myself that every year before I start getting to work. Here's how I get the donations that the Cystic Fibrosis Foundation so desperately needs. My parents send a letter out to all of their family and friends. That is a huge way to bring in money. They send a self-addressed, stamped envelope with each letter, and many people send donations. I do the letter writing campaign in a slightly different way. I send a message to every single person I am friends with on Facebook. This is something I started just a few years ago, because before that, I had really kept my CF a secret from most people. I had to let the embarrassment caused by the disease go and just accept it as part of who I am. I have been blown away by the generosity of my Facebook friends. People I haven't seen since high school make donations, and friends of friends add to it as well. I ask the people I am around on a daily basis in person. The people that I work with are always willing to give something, and this year, I have many more people to ask. :) It's just another added bonus of being a teacher. Finally, last year, I designed a t-shirt for my team. I sell them for $20 each. The more shirts that are ordered, the cheaper they become. I then take all of the extra money after covering the cost of shirts, and donate it. Last year, I raised $200 from selling the shirts. When asking for donations, make sure to explain what cystic fibrosis is. Most people have no clue what it involves. They may have heard of it, but that's about it.

This is a picture the Cystic Fibrosis Foundation posted on their Facebook page. It shows the basic issues caused by cystic fibrosis, and it could be a great tool to use when fundraising.

That's it. I do four things to raise money. You just have to be willing to put yourself out there and tell your story. Be willing to fight for the cure we all want so badly!

I'll leave you with a link to an article from Forbes Magazine about Kalydeco which is a drug created with the money raised by the Cystic Fibrosis Foundation. One step closer to a cure.... one more reason to get out there and ask people for help! Forbes Article

Happy Happy Friday!

Today was the two week follow up PFT to see if the oral antibiotics have helped at all. I've been feeling better, so I knew that my numbers would be higher, but I wasn't sure how much so. Since today was a snow day, I got to sit around and worry what my numbers would show all day long. I am happy to report that my FEV1 went from 41% to 54%!  I could not be happier! My goal for today was 50%. I'm done with my antibiotics, and I've finally kicked the flu! It only took about 7 weeks.

Now that I'm finally back on my feet, I can really go back to concentrating on getting my FEV1 as high as possible. I have my next clinic appointment February 20, and my goal is 60%. I've been compliant with my treatments, and I'm starting to get back into a workout routine which includes running/walking with some of my teacher friends. Life is good right now!

That was the biggest news for this post, but now I think I'll rewind to yesterday when Knoxville, TN actually got snow! We got out of school an hour early and had no school today! It was great... a mess... but really great. :)

Happy Happy Friday!