Monday, August 19, 2013

Oh, Happy Day!!

I learned today that I have been APPROVED FOR KALYDECO!!!! I wasn't too stressed about not being approved, to be honest, because I have the correct mutation for it (G551D), but sometimes you just never know... I found out this morning through the woman at my CF clinic who put in my paperwork - she emailed me saying I have been approved from 8/15/13 -- 8/15/14 (Do I have to get 're-approved' every year?) and she also asked if I received a call to set up delivery. I didn't have any information to go off of as to who was going to deliver the medication, until I finally got a call this afternoon after school telling me the pharmacy I'll be going through and their phone number. Of course as soon as I got home, I called the pharmacy to set up delivery and the woman told me they just got the script an hour ago! Ha, she probably thinks I'm crazy for calling so soon!

Right now we're waiting for their pharmacist to put in some paperwork/information through insurance to figure out if/what my co-pay will be for Kalydeco, then we'll be able to set up delivery. She told me that if I don't get a call from them by Wednesday morning, then to go ahead and call them to set it up....Guess what I'll be doing on my lunch break Wednesday?!

I'm really excited to start taking this drug! If you don't know much about Kalydeco, or maybe need a refresher click here. These are my hopes for what Kalydeco will do for me:

  1. Improve my lung function, maybe get it back in the 90s?!
  2. Help me gain weight
  3. Help me with my tummy troubles (although, probiotics have been helping, too)
  4. Make my body healthier overall for a pregnancy in the future
  5. Possibly allow for me to cut back on a medication or two... (wishful thinking?! I hope not!)
THANK YOU, THANK YOU, THANK YOU to all of you who have ever donated to the Cystic Fibrosis Foundation to fund the research for this medication!!!!!!!!! BUT, we can't stop here! There are still another 96% of CF patients who don't have this mutation who are waiting for a drug like this to help them out! Please continue to raise awareness & funds for the CFF to fund the research of the many drugs working their way through the pipeline!

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