What I've been up to in the past few weeks :)

Gonna start with I'm really sorry for not updating, I've just been in hospital with a rubbish Internet connection and I've been trying to keep busy while I've been out so I've been with friends and stuff.
When I was in hospital Aanisaa and Blinky came to see me, which was fun. Me and Blinky decorated my wheelchair wheels, while Aanisaa sat and watched tv;). No I'm kidding Aanisaa did most of the work while me and Blinky took credit.
Thankyou Aanisaa! I love you! xxx

Two weeks later
So I started this blog and for some reason didn't finish it. Anyway, since I've come out of hospital alot has happened tbh. My sister Lucy has moved back in with me and my mum, and I've decided I'm going to write a bucket list. (Me writing this doesn't mean I think I'm going to die, I don't. I'm determined to keep a lung function above 20 and get this transplant.) JUST MAKING THAT CLEAR TO EVERYONE. I just think if I list the things I want to do in life I think I'll make myself do them more because I'm abit OCD about lists. I'm still working on the bucket list but I'm thinking I'm going to post it as my next blog. Comment if that would interest you?
I just need to say a massive thanks to Blinky and Kris for walking about a mile just to get me a slushy in my time of need! I love you two!;) (ofc they didn't make me write this) muahaha
I've also re-gained my love for my playstation. as a younger kid I was constantly on my Playstation, ITS HAPPENED AGAIN. Playstation games are now like £2 off Ebay, and my mum has kind of had to change her Ebay password so I can't buy any more. Woops...
I have done so much in the past few weeks but now I've come to writing it down, I can't remember. So I'll leave you with some pictures of me being a freak over the past few weeks. Remember to comment if you want me to post my bucket list!
Love always!!! x

Yes, that is a stethoscope. I accidentally took it from hospital, Don't worry, I will take it back :')

Okay, I was poorly and in hospital here.  Ignore my head.  Lmao

Hospital time.

Sorry I haven't updated! And I'm also using an iPhone to update today so I'm really sorry if any words autocorrect into something stupid. Haha. Everything in underlined italics I will explain what it is at the end.

Like I said in my last blog, I'm now in hospital. I was fine until about Tuesday night then I felt sick and had to have some extra oxygen. On Wednesday morning (before I came to hospital) I met my new home-school teacher. She was lovely and has taught someone with cf before, so was very understanding of everything that was going on. We talked about hat subjects I would be doing at home (maths, English, and science) and she also told me the days she was coming in the week. (Thursday afternoon and Friday mornings) which is great. 6/7 lie ins a week ;)
When she left we came to the hospital, in great hospital style there was no beds, so we had to come I through a+e. We were waiting in a side room (there was no beds in a+e either LOL) for 4 hours. Ward 85 is the ward for respiratory problems and cf. The nurses on here are like 2nd mums to me (or maybe big sisters) so I prefer this ward to any other. Thankfully my dietician is mint, and managed to speed someone's discharge up so I am happily on ward 85 :)

When I'm in hospital I'm on a drug called amonopholin (I don't know the correct spelling, don't cry), its a wonder drug for me. Although its a pain as I have to constantly have longlines/canulas (it can't go through my portacath as its to direct to the heart) and I have to wear ECG and sats probes all night when I'm on it. It does me the world of good, here's an example. Usually when I'm asleep my sats are below 90 and therefore I have to wear a litre of oxygen, but when I'm on amonofolin my sats stay above 98 all night WITHOUT ANY oxygen. My heart is usually fine so hopefully on Monday the doctors won't make me have the ECG probes from then on.  My hospital admission so for is going okay though. I'm not too fed up yet haha

 If you know me you'll know Disney channel takes up my whole life. I'm a Giant 7 year old. My favourite show is shake it up and in that show theirs a character called Flynn. About a year ago I saw on the CF Trust's Facebook page that he does a lot of  walks and fundraising towards a cure for CF. When I saw he had twitter, naturally I tweeted him to thank him. He's only 10 and does great work for the foundation. He tweeted me back, followed me and told me to keep in touch:)

In 4 days I will have been on the transplant list for 10 months. Which has gone crazy fast!

ECG/sats probes- ECG is 3 wires attached to a sticker that is stuck to both shoulders and 1 on my hip. A sats probe basically reads my oxygen levels.. Just by simply wrapping it around my finger/toe.

Portacath- this is a small rubbery lump that is placed under the skin and put through directly to my heart. Amonofolin can effect your heart so it can't go directly too it. I don't really know how to explain amonofolin, I know that they use it a lot on people who have asthma attacks so if you have asthma you may have had it.

Anyways I hope everyone is well and having a good year so far!  Lots of love, Liz. Xx

Just a quick, boring update.

Happy new year! Hope everyone has a happy and healthy 2013..
My new year isn't getting off to a good start really as I'm due IV's soon so my chest isn't feeling to good at all.. I started a course of oral antibiotics last week so I think they've got me through til now.. or I reckon I would have been in hospital over new year.
This is kind of boring 'cause I haven't done anything the past week really.. My body clock is completely on its back. I've not been able to sleep til 5am, then I'm waking up at about 3pm.. bad times. I'm definitely looking forward to hospital this time (NEVER thought I would say that) because when I'm in I go on an infusion called 'amonofolin' (don't know the right spelling) and it the first few Physio sessions when I'm in I really bring up all the crap from the bottom of my chest. I also use 'the bird' it kind of looks like a torture contraption, but it blows air into your lungs until the machine senses that your lungs are as full as they can get, with each cough it brings the flem right up from the bottom of your lungs. It isn't effective for everybody, but it works for me :) This is probably my last blog for a few weeks now, as I'll probably be in hospital by this time next week.
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Thankyou for reading!
Lizzie x

CHRISTMASSSS!

Hey! Hope everyone has had a good Christmas? I'm going to be blogging every Wednesday from now on, just because if I do it to often I'll probably blab on about boring crap.
The build up to Christmas was great:) + I've managed to stay out of hospital! Still going strong as-well ) Hopefully I'll make it to the full 6 weeks this time.. If I do, I'll be due in on the 7th of January. On Christmas eve I went to Blackpool to see my mums partners mum, and we went for dinner at a café on the beach. I obviously being me didn't eat much, but it was fun. Then when we got back I went to do abit of last minute Christmas shopping. IT WAS AWFUL, so busy! I decided I needed to tire myself out(I can never sleep on Christmas eve due to excitement) so while we were walking round I didn't use the wheelchair, I had a few coughing fits on the way round but nothing some Salbutamol inhaler couldn't sort out;) Hopefully soon I'll have some new lungs and I'll be walking round them shopping centres ahead of everyone else!
By that night I was absolutely shattered, so had no problem sleeping.. In fact I didn't want to wake up at 8o'clock when my mum was to excited to wait any longer. When I eventually did get up, I opened all my presents. I got an iPod (Music iPod, not a touch), Speakers, Clothes, Money, Make-up, and loads of other stuff:) My Christmas dinner was SO good.
On boxing day I arranged to go and meet Ashley and Aanisaa, it was cold but worth it as I haven't seen any of them over the Christmas period. We went to watch Ash skate for abit then we went for Mcdonalds before he had to go home. Me and Aanisaa got bored so we went into Manchester for a few hours. It was Madness, their was literally 1500 people in each shop -_- but I got a nice jumper in the sales:D
Today I've been so tired from having 2 full on days before, I've just had a PJ day:)
hope you're all well! Oh! and follow me on twitter as-well! @lizbomb_xo
Hope everyone's well!
liz x

The people that keep me going!

First of all, I want to thank all of you for the feedback on my first blog! I got something like 400 views in the first 24 hours, which is AMAZING! I also got told it jerked a few tears... SORRRRRY!
Now I've told you all about myself, I'm gonna tell you about all the people close too me, as I can imagine I'll be mentioning these people in my blogs ALOT! I'll start with my friends and work my way too family:)

Me and my best friend, Aanisaa. (when I was blonde) 

Aanisaa's art on the beach when we went to Cornwall!

This girl just means so much to me. She's the best friend a girl could wish for, in a sense that when I'm in hospital, she always makes sure she comes and visits me (even though its 2 long bus journeys away). She runs around after me, if I'm having a coughing fit she can tell when its a bad one, and instantly runs for something for me too spit flem into. The best thing about being her friend, is we can not speak or see each other for ages, then when we do see each other its like we've never been apart! We've known each other for 11 years now, and have been best friends ever since. I can't even put into words how grateful I am for her.
Now I'll tell you abit about my guy-friends:

From left to right.. Me, Aanisaa, George, Kris, Sol, and the two in the back are Blinky and Matt.

These guys are just, MINT! So much love for them.. I only started speaking to them properly in July, and I have a brother/sister bond with all of them Again I very rarely see these guys cause I've not been going out much lately (keeping myself as warm and as well as I can for Christmas!) but they always come and see me at my house when I can't get out, and they ALWAYS bring me Mcdonalds to the hospital when I'm in, and sometimes the bring be fudge. woo!  They're like stars, I don't always see them but I KNOW they're always there. I had an amazing summer with these guys! Hopefully by next summer I will have my sparkly new lungs and have even more fun!:)

Me and Orianna.

This girl makes my sides hurt, she makes me laugh too the point where I start choking on my laughter.. We have our ups and downs but its usually over stupid stuff, like which shoes we do and don't like or something.. so its easily sorted:) We go and meet celebrities together, cause I get too meet them privately.. CF & being in a wheelchair has too have some perks doesn't it!? ;) This photo by the way, was taken a few weeks ago at a photo shoot we went on together, SO MUCH FUN!

Lucy and Me.. She's 16.

This is my sister Lucy.. she's my youngest, older sister.. if that makes sense? We fight like cat and dog, but I wind her up really cause I know she won't react ;) We argue so much but if anyone else tries to give either of us crap then the other one doesn't let the person live it down..  Like I said she's the youngest of my 3 older sisters. For some reason I don't have any updated pictures of me with them.. so I'll talk about them on another blog :)
I was going to do this a little longer.. but its 3.30am and I'm getting kind of tired so I'll mention 1 last person

me and my amazing mummy

My mum is amazing! Her and my "dad" separated about 4 years ago, and ever since she has done everything for me, drives too a from the hospital every day when I'm in, she's now quit her job so she can be my full time carer.  She used to be able too do my IV's at home but now the hospital like too keep me in, as I'm on a new drug that can only be given via canula.. so that stinks. But me and my mum have silly arguments all the time, then within seconds we start laughing about it. I love you so much mum!
That's it for now anyway!:)
Liz xo

Get to know me!

Hi, I'm Lizzie. I'm 13 years old and I have cystic fibrosis. I'm doing this blog because I'd rather get stuff off my chest and let people have a choice of reading it or not. so if you're not interested then you should probably click OFF this page now.
I'll start by telling you a little bit about me. I'm 13, I weigh 40kg and I'm about 5 ft 2. I was diagnosed with Cystic Fibrosis (CF) when I was only 8 months old after failing a sweat test. I have a 3 sisters, 1 full sister and 2 half sisters. Although I'm the only one with CF. Until I was about 9 years old CF never really effected me, I was on normal 3 monthly Iv's (intravenous antibiotics) via a portacath and was always gaining weight (I was the chubbiest and tallest off most of my friends in primary school). When I was 10, I lost alot of weight and my Lung function was slowly deteriorating, The hospital then gave me a Gastrostomy and I have a feed via pump over night, lasting 7 hours. When I was  11 Doctors spoke to my Mum (Rachel, but I call her Razza) about going to GOS(Great Ormand street) for a lung transplant assessment, I didn't know about this at the time, as it wasn't a definite thing, but then I turned 12 and things slowly got worse and worse, my lung functions dipped below 25% and I was spending most of my time off school in bed, or in hospital. NOT how a 12 year old should be living her life.. I then got too a stage where I couldn't be bothered too do my nebulisers, my thought were 'what's the point' 'it's not kept me well so it wont make me better' and other silly things like that. Then the nurses came too my house and told me about the transplant, the Pros and Cons, Side effects ect. They then told me Transplant was COMPLETELY my decision, and if I didn't want too go along with it then I didn't have too. Of course I went to London for the assessment and they told me I was poorly, but not poorly enough (they like too get you on the transplant list at the right time) so then I went back 3 months later. This is when they decided I was probably ready to go on the transplant list, and ready for some new lungs.. so naturally my head was everywhere, me and Mum never really spoke about it, and the hospital told us too go home, talk about it as a family, then call then in a few weeks with my decision of whether or not I wanted too go ahead with the transplant.

Weeks went by and I decided transplant was the right thing for me, I went back too London in March this year, and I was put on the transplant list on my  13th birthday (16th of March). This is when I decided I needed too get my act together, and get myself as well (and fat) as I can for my transplant. The difference in me now compared too this time last year is amazing. I'm now on 6 weekly Iv's and I've gained 9kg in weight, my lung function is steady at 27%... It isn't amazing but its steady, and I intend for it too stay that way. I have now been on the transplant list for 9 months and had 1 false alarm call. Hopefully my day will come, and I will be out next summer with my best friends having a mint time with my new Lungies!
Til' next time
Liz xo