Tuesday, January 31, 2012

Good Things Coming

There is super exciting news in the world of cystic fibrosis today! Kalydeco, which is the first drug to actually treat the cause of CF instead of just the symptoms got approved by the FDA! It is only effective for 4% of those who have CF, but it is definitely a huge step in the right direction. Can't wait to see what they come up with next, and I have high hopes that it will be for those of us with the most common gene mutation, delta F508. My hopes are high.

This is the article from the Cystic Fibrosis Foundation. FDA Approves Kalydeco (VX-770) — First Drug That Targets the Underlying Cause of CF - CFF

This is the article from the FDA.

This is the article from Vertex which is the company that created Kalydeco.

Tuesday, January 10, 2012

Pretty Incredible

This is a woman who has a sister with Cystic Fibrosis. In honor of her, she ran 1,000 miles from St. Louis, Missouri to New York City in 65 days last year. She did it all to raise money and awareness for CF. Pretty incredible!

Sunday, January 8, 2012

Progress and Potential

I mentioned in my last post that I wanted to do more blog posts this year, so here's my first step towards that. This week has worn me out! I finished my first week of P90X, and every muscle in my body is sore which I love, because it shows me how hard I worked. I can't honestly say that I'm looking forward to week 2, but I am looking forward to being able to say that I did it. I'm working my butt off because my doctor's appointment is in 23 days. I want my lungs to be in the best shape possible! In that same area, I have now been 100% compliant for 69 days! I have never been so proud of myself, because staying compliant is much more difficult to me than anything else. I have always struggled with being willing to put the time into taking care of myself, but now that I finally am, I feel so much better. Amazing how that works. Ha! My husband told me the other day that he was proud of me, and I just ate that up! The support that I get from Eldon is phenomenal, and I really don't know that I would be where I am now without him. I am doing this almost more for him than for me. I owe him my healthiest self for as long as I can give him that. Plus, we both really want to have a baby, and I will not do that if my lungs are not in good enough shape. There is so much to work for and so much to look forward to. This is why 2012 is so exciting to me! There is just so much potential.

Thursday, January 5, 2012


I'm a few days behind on this one, but life has been a little crazy. 2011 had a lot of ups and downs for me, but it was one of the most life changing years so far. I got married and made major changes when it comes to taking care of myself! I couldn't be more excited about 2012 though. I have high hopes and higher goals. I decided that I would post some of my resolutions on here so that I will hopefully be less likely to fail. Here goes nothing:

  1. Keep 100% compliance with my treatments
  2. Workout everyday 
  3. Use my treadmill everyday (That can be for running or walking)
  4. Complete P90X (I fell off the train for a few weeks, so I'm starting over, and this time, my sister is doing it too. That way we can hold each other accountable.)
  5. Find a teaching job
  6. Read 50 books in a year (This one is hard, but I love to read. I really want to spend more time reading good books. )
  7. Be more artsy (crafts, DIY projects, paintings)
  8. Raise my FEV1 to 70% (atleast... the higher the better)
There are some others, but I won't bore you with those. These are the most relevant ones for my blog. I'm so excited about what is to come, and I really hope that I can start seeing a difference in myself.

Right now, I have kicked everything into high gear, because my next doctor's appointment is February 1st. My goal for that appointment is to have my lung function up to 60%. That's a big jump from where I was in October, but I think it is possible. I am anxious to see what all of my hard work has done for my lungs.

On another note, I would like to do more posts this year, but it is sometimes difficult to come up with topics to write about. If you have any questions for me or ideas for a post, please let me know. I would love some input!