Finding it hard to keep up on this as I'm used to Facebook but I have just come back from a 5 day trip to Spain with Harry which was lovely. Went hospital today for a check and everything's fine! Still no iv's I'm loving this 6 month break! Had a port flush which hurt a lot but all good now and still bleeding back. The doc suggested I start my blood thinning tablets again after not being on them since January after experiencing heavy bleeding, but all is settled now so fingers crossed all goes ok

So Harry is expecting me to take a tiny suitcase the size of a rucksack for a 5 day holiday.. Got to try and get everything in there, including drugs! This is not going to happen?!

Went to bluewater today ended up losing my phone for 5 hours running around like a nutter to different shops trying to find it, got it back in the end, now sitting in bed watching rude tube doing my vest. Very tired!

So mum and jay have gone to south wolds for the day which means I have to do my own treatment! Im used to mum handing me my made up nebs an putting my jacket on! Time to get organised ahh!

Chest is getting a bit dodge.... Got to power through it because I'm going away with Harry on the 18th so haven't got enough time to squeeze in a course of iv's!

So I got into my course but decided I didn't want to be committed to 3 days a week 9-5pm. Plus there were 2 other cf people at the college in the same area as me so thought it was best to avoid!

Beauty therapy

Got my interview in an hour for my beauty therapy course ahh scared!

My life

Hey, so i'm Annabelle (Bella, nickname) and I have cystic fibrosis....unfortunatly! I am creating this blog to inform and keep people updated with what's going on with gene therapy as I am one of few who is taking part in the trials! It was supposed to start in August and they keep putting it off to be a month later so I am hopeful that it should be starting sometime this month (September). 

So a bit of background info about me. Well I was miss-diagnosed with cf and it was only discovered when I was 5 months old. My left lung had collapsed, I was a shade of blue and very chubby! I also had numonia. So basically it was all a bit shit! I spent about a year pretty much in hospital fighting my way through it trying to survive and fortunately I did and here I am now! 

I am now 18 years old and doing nearly everything a normal 18 year old does, clubbing until 6am, drinking a lot, festivals. But NOT smoking because that is pure stupidness. My profession is very part time dog grooming, walking and also day care which my mum and stepdad love, a manic dog stirring up the house all day. Although today I am going for an interview at my local college to do a beauty therapy level 2 course which I am still deciding if I deffs want to do it as its going back to school pretty much and I quite like not having to be committed to anything (apart from my boyfriend). Harry McKenna 20 years old been going out for nearly 4 years this month. His absolutely brilliant, very understanding and caring and always there when I'm in hospital! 

I am a pretty well cf sufferer (apologies for the username, wasn't to sure what I was creating and every name I wanted was taken!). I stayed in school all the way through to year 11 missing an average amount but not terrible because I still managed to go, even on iv's. I completed my GCSE's achieving 1 A, 4 B's, 3 C's and a D which was in science that I only decided to do in year 11 and self taught myself so achieving a D I thought was quite good. I started A levels and got half way through the year when my portacath (port) decided to block. So I had quite a bit of trouble from then on which I won't go into too much detail because it may take a while. But when they tried to get another in they failed and stuck a Hickman line in instead. Then attempt 2 they managed but the port only lasted 6 months. Attempt 3 I was sent to addenbrooks to one of the top sergeons who also failed! It was discovered that the whole top half of my body (veins wise) basically didn't work! So I ended up with a port in my groin on my themeral vein! Now after all this trauma as you can imagine I missed plenty of school and my health was in a very bad way. So I quit sixth form and did a dog grooming course. But it has taken me until now so nearly 2 years to get my health back on track and away from needing iv's every 3 weeks. 

So yeah that's my life and this is me now, sorry for such a long first blog but there's a lot to say and a lot more that I have missed out but that's all the basics. I will keep you updated with day to day life and let you know every little detail about the trials when I start :) (apologies for spelling im also dyslexic).