Wednesday, February 27, 2013

Amazing Things

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.

Wednesday, February 20, 2013

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!