I joined blogspot quite a while ago but never actually went ahead with writing my blog, probably because I was unsure of what to write without sounding boring! I have read many CFer blogs but it wasn't until last week sometime when I was reading a blog of a CF friend of mine, that she had recently set up, which inspired me to go ahead with my own! I hope you don't mind Grace ;). So here's the start I guess!
I'm 16 years young (I wouldn't say I'm old yet), have Cystic Fibrosis (CF) and Scoliosis and have been on a battling journey my whole life...
From the day I was born my mum knew something about me 'wasn't right', my cousin Sian suffered from Cystic Fibrosis, but sadly passed away in 2006 at the age of 11, but for some reason mum was certain I had Cystic Fibrosis too. She kept taking me to the doctors but nobody believed her. However, I wasn't gaining weight so many tests were taken and I was diagnosed with Cystic Fibrosis at around 3 months old. Mumma knows best right?
Well since diagnosis a lot more has happend, I could write a whole book on what's its like living with CF, but instead I'll do a chapter and let the rest come at me as the future lyes ahead. I had my first admission for IV's at the Royal Brompton & Harefield Hospital, London when I was just 7. That may sound very young to some people but now a days people are starting IV's at just a few months old!
I was very very needle phobic for years and used to have to be put under a GA (general anaesthetic) just to have a PICC line accessed. I used to scream the place down when anybody came near me with any needles. I still always remember at my old local hospital when a Nurse chased me round the room to try and take my blood. It wasn't until my mum shouted at her and told her it was unprofessional that she stopped. Then another time when a nurse laughed at me when my Cannula collapsed (I hated cannula's more than anything so was crying my eyes out). My first few admissions at both the local and the Brompton were not great and it put me off going into hospital forever. But I soon saw a lady who spoke to me about everything to do with my CF and why I got so upset, she changed my thoughts and over the years I got so much better! Around 5 years after we moved house, to Basingstoke, I changed my local hospital to there too but carried on having my shared care with the Brompton. I had my PICC lines fitted with just some Emla cream (yay me). But then the Brompton decided to put me on 3 monthly IV's (every 3 months have the 2 week course of IV's). This meant more PICC lines and my poor arms couldn't take it all which is when the Port was introduced!
I had my Portacath fitted in April 2011 and absolutely love it, I would not go back on it and suggest to any CFer if you are not a fan on PICC lines to have a Port fitted!
Enough of all that anyway, I won't write about my Scoliosis as this blog is already crazily long and doctors have confirmed its nothing to be worrying about now :-)!
Nearly finished ;)...
I have just joined the Adult CF Unit at Frimley Park Hospital and recently had my first admission there (decided on my first ever appointment!) the staff there are all lovely so I'm sure I'll have some stories to tell over my years there!
I just got my GCSE results and I'm due to start Queen Mary's College next week, it seems so crazy to say I left school nearly 4 months ago!
Anyway I haven't done this blog to go on about how rubbish living with CF is, because to me my life is 95% as good as anyone else's! I don't let my CF bring me down and do everything I can do that anyone else without CF would do! I even threw a house party on Friday yet I was in bed ill all day- like I said I don't let my CF bring me down, if there's a party I'm there!
So live life to the full and enjoy it whilst you can :)