Tuesday, 19 February 2013

Happy lungs = Happy Grace (& a psuedo love story!)

The title of this blog pretty much is what I have to say! My lungs actually are feeling quite happy at the moment :) 
It's two weeks ago today that I first started Kalydeco, the first week not too much difference as I was so ill beforehand I wasn't feeling any different. However, the past 4 days or so I've suddenly just felt like I have so much more energy! It's so strange, I don't even know what to do with this energy..I'm not used to it.  My lungs feel like they're not drowning in so much mucus, which is fabulous and such a good feeling. I've even managed to walk around Wisley for a couple of hours.  My lungs do tend to ache still at the back when I'm doing lots of walking, especially if it's at a quicker pace however I'm not getting the breathlessness which means I can afford to push myself further :) I'm hoping in the next few weeks to start swimming after work a couple of days a week, build up my stamina with that as I always LOVED swimming when I was a child and when I took my GCSEs I left the club I used to belong to so I could focus on my exams.  

On my annual review analysis letter it said my Pseudo growth is now light which I reckon is down to the Cayston neb as I hadn't started Kalydeco then! Which is fab.  If you've been reading my blog a lot, apart from deserving a medal for sticking with me, you will know that Pseudo is basically my lungs best friend/enemy.  Pseudo just wants to be friends with my little lungs but unfortunately they just don't feel the same way and I think they are starting to go their separate ways. I probably wont ever get rid of Pseudo as my lungs are classed as being colonised with it as I've had for years now. But as long as I can keep it to a light growth and try to reduce any Pseudo flare ups then we can try to manage to live side by side!

Another amazing thing to tell you....my morning cough has pretty much disappeared!  If I had a penny for the amount of times I would wake up either in the night or especially in the morning coughing for a good 20-30 minutes, struggling to breath and half the time resulting in me being sick purely from the amount of coughing I would be the richest person in the world! Over the past week this horrible annoying cough has gradually left so yes I still have a cough in the mornings but it's a little one, just for my lungs to let me know they're still doing their job ;)

The other night I did have a couple of panic/anxiety attacks when I was in bed, luckily nowhere near as severe as they used to be.  Haven't had them for AGES and suddenly one appeared from nowhere..I'm not even sure why! My breathing has got better, I'm feeling better and I don't feel that I'm particularly worried about anything.  I know when I had my annual review they said my anxiety score was quite high but I don't know why I would have a mini panic attack over nothing! Anyway, it was so small it kind of feels pretty insignificant now.  One happened the night after too but again, nothing like I used to get where I would sit down hyperventilating, shaking and crying and only my Mum could calm me down and help me to breathe properly.  This I managed to just calm myself down within minutes so I guess it may have been one of those things! I've told my panic/anxiety attacks before that they're not welcome so they know where to go ;)

LASTLY! Sorry for going on for so long. I had clinic today, and in two weeks of being on K my lung function has gone up HALF A LITRE! It's now 1.8litres which is around 60% :) That's amazing it's gone up that quick, I can easily loose a litre in that time but it usually takes me so long to gain that back!  Dr Higton was so pleased with me.  I asked about stopping my steroids, and she said to have 5mg on alternate days for two weeks then stopping.  But if that makes me feel dizzy I'll go back to normal and possibly try an even slower way of ramping them down and getting off them.  I've been on an up and down dose for a year now and they said when you're on them for a while your body stops producing natural steroids so they may need to help it by doing an even more gradual decline but we'll see how that goes.

It's half term this week so I'm making sure I do lots of walking to exercise my lungs, going to see a couple of friends and then Tom at the weekend and FINALLY back to work next week, cannot wait to go back! Very excited! 

That's all for now folks ;) 


  1. Grace,

    I love to read your updates on Kalydeco. I hope you continue to post about it. It makes me so happy to hear that people are benefiting so much from the magical pill. I am glad your PFT is improving and your energy level is off the roof.

    Keep up the good work. Take care cyster!

  2. Thank you John :) Glad you're still enjoying the updates and I'm not boring people!
    Hoping my lung function goes up even more in the next two weeks before my next clinic visit!
    Take care

  3. You say Pseudo is your friend but lets face it; it has been getting a free ride on your lungs for too long! I think it's time you evicted it ;-) Great to hear how well you're doing since starting K

  4. I have just read this and now it looks like I copied your post title :( hahaha! Glad kalydeco is treating you well!

  5. Lovely blog! Just followed :)

    Could you please take a moment to check out mine? Thank you




  6. Great to hear more good K news. My son is g551d and doing well.