Wednesday, October 22, 2014

Big Kalydeco Day!

Today was another big step forward in getting Kalydeco in my hands! My CF mutations are dF508/R117H-5T. Today the FDA had an advisory committee meeting to discuss the results of the clinical trial of Kalydeco in patients with the R117H mutation. The committee voted to approve it, 13-2! Now I have to wait and see if the FDA will decide to go along with the committee's recommendation, which it usually does. The FDA has until the end of the year to decide.

I was almost in tears listening to the testimonies of people with R117H who have been on the drug. They all said they can't imagine going back to the way they were before Kalydeco. They all said they can now plan their retirements. They all said it was a miracle. I can not believe I might be able to feel that difference soon - to not cough anymore, to not be so tired and achy by the end of the day, to be able to fully breath out of my nose and really smell things again! And to have the confidence that I will be here to help raise my grandchildren :) Crossing everything!

Sunday, October 19, 2014

It's Been Forever

I know I dropped off the face of the earth almost two years ago. Life got insane once I had two kids! But, lately I've been thinking about blogging again. When I started this blog about six years ago, it was because I couldn't find much information about pregnancy in women with CF. Now, it seems like that has all changed. There are hundreds of women with CF having babies, which is so awesome! But, I've realized that I am still one of a few in the CF world - almost 40 years old (I turn 38 in a few weeks), with two kids! I think I still have information to share, and I think I may finally have the time to blog again. We'll see how this goes....

So, I think I need to share an update since my last post! My sweet Grace Helen was born on 2/9/13 at 40 weeks 4 days. I went into labor on my own, but I failed to progress and was administered pitocin, which caused such strong contractions that her heart rate was dropping with each one. When her heart rate didn't recover, I was sent for an emergency c-section. That was very scary, but she was born perfect - even had an Apgar of 10!

Here is a picture of Grace from the day she was born:

And this is her now:

Hopefully more info to come! I am excited to get back into this!

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