May 19th

Figured it was time I should send an update out on how I am doing. I had a bit of a cold a few weeks ago...I still haven't been feeling 100% and had been coughing a bit (not nearly what I was like on a "normal" day before I started Kalydeco)...so I called my CF clinic last week.

I described my cough and they decided to put me on 2 antibiotics. Doxycycline-my normal antibiotic for lung infections, in case I have something going on in my lungs. The 2nd antibiotic was a z-pack, 5 days of Zithromax. A friend was diagnosed with whooping cough - I had been around her a few times when she started feeling sick a couple of weeks ago, and then again the other day. Even though I had my DTAP booster last year, the CF clinic would rather be safe than sorry.

I finish up my Z-pack tomorrow and am on Doxy for 14 days total. Hoping by the end of those 2 weeks I am back to my normal (after starting Kalydeco) self.

When you are on Kalydeco you have to have your liver function tested to make sure it is within normal limits. I had mine done a week ago and it was normal-yay! I also had to have a glucose test, you know the 1 hour and 3 hour test you have to do while you are pregnant? Us lucky CF'ers get to do that every year! My numbers came back normal, thank goodness. I am NOT looking forward to doing it again next year though-that drink is HORRIBLE. And we can't  forget my story of throwing up all over the Univ. of WA hospital entrance when I had the test done when I was pregnant. Ugh. I hate glucose tests. Luckily I did not throw up at the clinic :) 

On another note, I have heard several stories of how insurance companies are stopping their patients from getting Kalydeco because they are taking it off label, like I am. People who have previously been on Kalydeco, and it is working for them, are being denied for refills. I am SO scared this is going to happen to me....I try not to stress about it though. As soon as my insurance company calls me to set up a refill-I have them send it out ASAP. Cross your fingers that they do not deny me.