Tuesday, 12 February 2013

One week on Kalydeco!

Hey everyone!

My first full week on K and after a few days I was wondering what all the fuss was about as I still wasn't feeling any different to how'd I'd been the past month (although maybe I was thinking miracles would happen!) I was still getting high temperatures, and feeling breathless and coughing so much that it was making me sick half the time. But then I did remember that the nurses said the first week on K can be rough and as I'd been feeling so poorly the past month anyway I don't think I'd really noticed the difference! 

They said about the headaches/sinus pain you can get, especially for the first couple of weeks. After a couple of days I'd had nothing so was getting a bit cocky and thought maybe it wouldn't affect me that way then BAM at the weekend I was in agony! Plenty of nurofen, paracetamol and cooling patches for me! 

Today is the first day I've actually thought 'wow I might be able to do things, go for a walk' and have felt like I've had a lot more energy and focusing less on breathing. So let's hope K keeps on doing it's magic and hopefully by the end of this week I'll be absolutely buzzing and my lungs will do what they're told! I've got a check up next Tuesday to see what my lung function is doing..although I'm feeling better in myself and I'm not coughing as much, I don't think lung function would be too good as if I do a deep breath in I cough and splutter! But we'll cross that bridge when we come to it :) 

I still managed to see some family to celebrate mine, my dad & Auntie's birthdays which were all at the beginning of Jan but because of snow and then a few other things we couldn't meet up until now! However I did slap on a smile as during the meal my lungs suddenly became really sore and I felt so shitty with the temperature but never mind, carry on as normal!
Also, I'm really missing work :( Cannot wait until after half term when I can go back! 

Yay for beginning to feel 'normal' again! And as it's pancake day I'm off to go and cook lots of yummy pancakes to eat. Hope you all have some scrummy pancakes too!


  1. Grace I am so excited that you have the magical pill!! I am looking forward to reading more about how you feel on Kalydeco!! Keep kicking CF butt cyster!

    1. Just saw this! I'm awful with comments, never find them until weeks later! Thank you :) Another update just written actually, haha.