Four months of Kalydeco
I went to clinic a few weeks ago and my FEV1 was 70% 😀
It’s the first time I’ve been out of hospital for five months in the last few years and the first time I’ve been stable without antibiotics in about 15 years!
Start: FEV1: 41%, Weight 55.6kg
4 weeks: FEV1: 70%, Weight 58.5kg
8 weeks: FEV1: 71%, Weight 60.0kg
4 months: FEV1: 70%, Weight 61.5kg
Kalydeco helped me bounce back from my cold, helped stop my PFTs from dropping and helped stop me from getting sicker. With my last three overseas trips I’ve returned home and my FEV1 has been at 49, 50 and 41%. The only way I improved back then was with IVs. Now my body’s ability to cope has improved dramatically. Being stable whilst pushing the limits (travelling, plus the cold temperatures, pollution, smoke and no nebuliser) and still staying at 70% is amazing!
I am planning to stay on Bronchitol and see how this goes for the next few months. I love how convenient it is and it is still helping me clear my lungs well. My cough is back to my new ‘normal’- meaning I am not coughing very much and if I do it is yellow in colour and easy to clear. My energy levels are improving, but I discovered recently that I still struggle with full time university (9-5 every day). Last year I struggled with part time uni, so this has improved a lot, and I am hoping it will continue to improve.
Over the last 10 years I have kept my lung function results in an excel document, so I decided to make some graphs showing my FEV1 and weight. The graphs are pretty amazing, they show my new stability and the very large initial improvement.
I am currently at my highest FEV1 in 2.5 years and only 5% off my highest in 8 years.
This is my highest weight ever. My BMI has changed from 20.0 to 22.1
For anyone who is interested in stats, just for fun (I have been studying stats & evidence based practice for 3 weeks at uni) I had a look to see if my weight and FEV1 were correlated and found there is a strong (r=0.64) relationship between my FEV1 & Weight. There is also a very strong relationship (r=0.92) between my FEV1 & FVC.
magicbluepill 
February 7, 2013 at 10:23 pm
Graphs are a great way to show how Kalydeco has helped!
March 6, 2013 at 10:57 pm
Hi!!! Glad to hear of your success with Kalydeco!!!! Are your genotypes the FDA approved mutations for it, or are you on Off Label Kalydeco?? Thank you!!!
March 7, 2013 at 1:22 pm
Hi Erica, yes I have G551D and F508del. I live in Australia and it is not approved or listed on our health system yet, but I am on a program for people who are quite unwell (40% or below FEV1). Are you/someone you know trying to get Kalydeco off label in the US?
March 7, 2013 at 3:59 pm
Hi!! Yes I am trying to get off label Kalydeco because my mutation is P67L and it’s been shown to respond well to Kalydeco but isn’t FDA approved for that genotype. I am trying to find out how others are getting it Glad you are doing well!!!
Sent from my iPhone
March 24, 2013 at 1:32 pm
Hi Erica, good luck trying to get Kalydeco, the graphs show that P67L gets to about 40% of normal function, hope you can get it soon!
March 24, 2013 at 11:10 pm
Hi!! I officially started Kalydeco this past Wednesday after my sweat test! I have had 9 doses so far!
I sure hope it helps me! I don’t really know how long it takes to really start going to work, but my FEV1 on Wed was 34% so I hope in a month or so I will have some/any improvement! How long when you began taking it did you notice something was happening????
Thank you kindly
Erica
April 2, 2013 at 3:22 am
Thats exciting, how are you going on Kalydeco? I noticed changes in the first 24 hours, I cleared a lot and according to my pft machine went up about 10%. My pfts continued to go up and reached the max by 3-4 weeks. I have written a reasonable amount of detail in my early posts such as this one: https://magicbluepill.wordpress.com/2012/10/06/the-two-week-point/