Update on me.....

Nothing new from here-which is a good thing! :) Since my insurance company has re-approved me to be on Kalydeco off label-I have ordered it twice and have had no issues - thank goodness. The clinical trials on one of my mutations (R117H) and Kalydeco are going on right now - I cannot wait to see the results! I did just see that they have posted a new trial once the R117H trial is over to allow all patients in the trial to be on Kalydeco "Open Label" - meaning that they can be on the actual drug until it is approved by the FDA for the R117H mutation.

Of course-we all know that Kalydeco works for me (meaning that it works on R117H) - but there was always that doubt in my mind saying "what if you are a fluke and it just works for you for some reason....but doesn't work for other R117H'ers"......thankfully this does not appear to be true - because if it wasn't working - I highly doubt that they would allow it to be given open label after the study! So-this is great news!

I have another clinic appt at the end of November - anxious to see how my FEV1 is doing. I just got my flu shot yesterday (finally) - there have been a ton of  bugs going around (achy, fevers, coughing) and I don't want to get any of them if I can help it!  I am anxious to see how I do this winter - as I have never gone through a winter on Kalydeco. Depending on how bad the winter is, I am usually on antibiotics (a 2 week course) anywhere from 4-8 times throughout the winter....which can sometimes feel like I am pretty much on antibiotics all of the time!

I think the last time I was on antibiotics was in April (I think?) - which is amazing for me!

I'll probably post again after my CF appt to update on my clinic appt!