29/5/12 -PRE KALYDECO
Sodium: 132
Chloride: 114
2/10/12- POST KALYDECO
Sodium: 44
Chloride: 33
VERY HAPPPY!!!!!! So amazing to actually see the numbers!!
Chloride: 114
2/10/12- POST KALYDECO
Sodium: 44
Chloride: 33
VERY HAPPPY!!!!!! So amazing to actually see the numbers!!
What this basically means is that my body is now basically working
like a normal ‘non’ C.F body all thanks to KALYDECO!!!! A normal persons body
chloride levels are normally around 30 and mine have come down from 114 to
33!!!!!! PRETTTY AMAZING for two small blue tablets a day!!
Before starting Kalydeco whenever I would run or do any physical
exercise I would always end up with a huge amount of salt all over my face and
body. Since starting Kalydeco it is allowing the channels in my body to work
correctly and because the channels are working properly my body isn't producing
lots of thick sticky mucus, which causes all my problems (mainly lung
infections, reflux, digestion problems etc etc.) in my body. So a long story
cut short it basically means I'll hopefully grow really really
old and get wrinkly and grey hair!!!!!!!
:-D
p.s cant wipe the smile off my face!!!
Here is me and my beautiful friend Em celebrating the great news!!
Fantastic news, Alex! My daughter has a splicing mutation and she is on Kalydeco off label. It has helped her go from 37% FEV1 to 61% in 10 weeks! Maybe we can connect on Facebook? I'll look you there. So happy for you!
ReplyDeleteThat's great Alex, my daughter is G551D/F508 and we're in the UK still waiting to get Kalydeco, hopefully it won't be long. It gives us all hope over here when we hear how well it's working elsewhere in the world. Keep well :-)
ReplyDeleteThis is wonderful. Thank you for sharing. I hope you are continuing to thrive on kalydeco. Blessings to you from a mama to a beautiful Miss 11 with cf double delta 508
ReplyDelete