Thursday, 29 May 2014

Moan And Celebrations

Moany post! 

I feel crap, since clinic ive just started slowly feeling worse and worse and now im just fed up! Today i actually got dressed and left the house, the last few days ive just stayed in my pjs all day and felt sorry for myself. 
I struggle breathing more and energy levels are like zero!! My appetite is non existent and fitness has not happened at all....my head really wants to get back on the treadmill and get all energetic again but my body just cant handle it, just opening and closing the boot of my car today had me gasping for breathe!! 

Im hoping im just having a rubbish few weeks and il start picking up again soon, quite frankly i have lots of social events coming up so i dont have time to be ill lol.

Today i went to put in a proscription to my new local pharmacy, ive lived in Cobham over two years but finally moved to my new drs in my area (only because they chucked me out of my old one) lol but ive never had to pay for prescriptions before but has Cystic Fibrosis isnt covered on the NHS for free prescription and it is £8.04 per item and need to purchase something called a PPC which is a pre payment certificate so i just pay either £30 for 3 months or £104 for a year. but i haven't got this yet and i thought i could get it from pharmacy...well i was wrong i have to apply for it then i can use it, so if i had put my prescription in today there is well over 15 items so i couldn't afford to do that...well i could but it would be mad to waste money...i can go a few days without a few drugs, ive got a weeks worth left any ways!

Also joining my new GP and adding on all my repeat drugs, there were drugs that they wouldn't add on because they were too expensive lol one of them was Pulmyzine...didn't even realise that was expensive, then they came to my Kalydeco and i just laughed and said well thats £350 per tablet so if they wont let me have pulmyzine there's no way thats going to be added!

Luckily the drugs that i cannot get from my GP i get delivered from a different company now, which now seems to be the nebs and kalydeco. 

i shouldn't really moan at least apart from £30 every 3 months i don't have to pay more!! 

Anyway on a brighter note, i was feeling a bit brighter last Sunday and managed to go into London for lunch with my mum to meet some fellow CF friends we had meet over the internet.

When Kalydeco was first mentioned back in april/may 2012 to us my mum decided to go on the internet to look into it a bit more and find out how people were on it and got in touch with people on a fb group, that is were Teresa contacted my mum to tell her how great the drug was and they were fighting for it for there daughter savannah.

So we had the lovely pleasure of meeting the both of them whilst they were over here in the UK visiting.
We had a lovely lunch and some bubbles to celebrate us both being on Kalydeco and how well were doing!! 

That is all...
Much Love!!


  1. Hi George!

    What a pleasure it was to finally meet you and your mum in person!!! We had so much fun getting to know you both. :)

    I'm so very sorry to hear you aren't feeling well. It can be really tough to keep up your spirits when you're not at your best. You are tough and I so admire that fighting spirit of yours. Keep up the battle and hope all of your meds get delivered and you are feeling better soon!

    Teresa XX

  2. Hope you pick up soon! Do you have a port or a button/peg? You can get prescriptions free cos of having one of those as they're 'indwelling fistula devices', you just need to fill in a form (from the gp or pharmacy I think) and get your gp or clinic doc to sign it and then you'll get a card valid for 5 years for medical exemption. I'm really hoping they actually look at the petitions that were made to have them reconsider CF for free scripts as it actually hasn't been changed since the 60s and CF had a rubbish rate then. Oh and if you do end up needing to pay full price for your meds I'm sure there's a way to claim it back but I'm not totally sure on it xx