Friday, January 25, 2013

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!

Sunday, January 20, 2013

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.

Saturday, January 19, 2013

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

Friday, January 18, 2013

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! 

Saturday, January 12, 2013

2013 Kayla's Krusaders

I can't believe it is already that time of year again! I have started designing the Kayla's Krusaders shirts for this year, and my friends and family have begun voting for their favorites. Here are the options.... I'm thinking I will make the final decision next month so I can start taking orders. :)

Saturday, January 5, 2013

New Game Plan

After two weeks of having IV antibiotics, I went to have my follow-up PFT on January 2nd. My FEV1 showed almost no improvement at all. It went from 40% to 41%. I also lost some more weight. I was extremely frustrated, and my cystic fibrosis nurse was very concerned. After talking with one of my doctors, they came up with a new game plan. I'm now on the oral version of vancomycin which is called zyvox. I will be taking this antibiotic for two weeks along with prednisone. I'm very hopeful that this plan will be more effective for me. I know many people who get amazing results from IV antibiotics, but of the three times I have used them, I really haven't seen much improvement.

I have been feeling terrible for over a month now, and I'm praying that this works for me. I'm so ready to be back to my old self. Without the limitations of having a picc line in my arm, I will be more able to get back into a work out routine. I have another follow-up PFT in two more weeks. The prednisone should help with my appetite as well, so I'm hoping to put some of my weight back on soon. I have lost a total of 14 pounds. I haven't weighed this little since my old doctor told me I needed a lung transplant.

After just two days on this new regimen, I already have more energy, so I have high hopes! I start work on Monday, so I just need to get back to feeling better soon.