Third check in after Kalydeco

[jessykt]

Just did another round of tests at Jewish. I've been on Kalydeco for abour 3 months now. Beginning fev1% was around 59% and it is now 69%. I'm sure it should be higher (it was 69% last time, too), but I am in Fort Collins, CO, about 10 miles away from that huge, HUGE, wildfire. We've had two wildfires in 3 weeks, and this latest one is just out of control. So, anyway, I was a little disappointed I didn't improve, but I'm thinking with all the smoke, maybe Kalydeco is the thing that's keeping me from going down the tubes!
I've lost about 3 pounds after I had gained two, but I'm going on 4 weeks of grad school and it'll be the death of me before cf. I'm so stressed out, I'm having a hard time eating. Yay, education!

Anyway, that's it. Haven't kept in touch with any of you since I started school; I don't have a life. Hope everyone is doing the best they can<img title="Laughing" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-laughing.gif" alt="Laughing" border="0" />

Jessy

 

[JENNYC]

Thanks so much for updating!! I hope you're right, maybe the Kalydeco is keeping you healthy through that thick smoke that would bother even a healthy person's lungs. Good luck with grad school!!! Please keep us posted in the future!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[echolaura]

thank you for the check ins, jenny. My daughter seems to only have a mild response to Kaly as well. The stories published during the end trials are probably the most dramatic. We can hope that at the very least, we stop the disease process in its tracks. Please stay well.

 

[Austen742]

Sorry to hijack this thread but i can see there are people on here who are or have children that are taking Kalydeco. Our UK group Quest for Kalydeco are trying to make some headway on getting Ivacaftor approved for funding in the UK. We have been told that the stumbling block to all this (other than the massive price) is there is limited long term data and no evidence that people on Kalydeco use less treatments. Hence not being cost effective. So we are trying to get some personal testimonies to take to present to them at a meeting on Thursday to show this is true. If you can help us with this it would be amazing and we would hugely appreciate it. Plus feel free to email us on patient.interest.group@gmail.com.

We also have a very quick anonymous survey that can be completed to help our cause <img src="i/expressions/face-icon-small-smile.gif" border="0"> http://www.surveymonkey.com/s/RNNC8HN