Life...

I really feel like i'm abandoning my blog but every time I go to write something on here, I realise I haven't actually done anything interesting. I haven't this time but just letting you know how I am really.

I'll get the only bad news out of the way, my portacath MIGHT be broken :( for anyone that doesn't know what that is, it's a small plastic lump thats under my armpit. And basically when I was younger I had so many canulas that my veins got bored and must have thought "oh I know, lets be awkward little veins and disappear so Lizzie can't get anymore medicine into us" when this happens most people with CF get a portacath, it's hard to explain what it is so i'm just going to say its like an artificial vein. The line inside me obviously isn't my own so I shouldn't feel any of the medicine going in. Last iv's I was experiencing ALOT of pain when they gave me the antibiotics. They did two lineagramms (which is where they put dye into the line and x-ray whilst doing it do see if the dye seeps through any cracks) but both of them were fine. They also did an ultrasound where I was feeling the pain and that also showed nothing, frustrating really as I think the doctors thought I was just being dramatic. I'm hoping my port was having a bad week as I really don't want to have another op :(

Since I got out of hospital I've been feeling great. The first week I was being sick ALOT but when we changed my peg we soon realised why.. It was nasty, eugh. I would post the picture but to be honest I was sick when I saw it and i'm not usually queasy, just thinking about it now is making me feel sick eugh.

Like I said i've been feeling fab! So that's left a lot of time for friends! yeyyy. We've been spending a lot of time outside now it's getting warmer.... Watch as soon as I post this the heavens will open. We haven't been doing a lot just walking (me being pushed) round. today I went for an ice blast and a hot-dog from the cinema. We sat down on some grass and Adam played the guitar and it was just nice, like a film or something. I'm a pretty cheesy person so I enjoy these moments haha.

I also managed to cross another item off my bucket list this week, I helped a homeless man! I was pretty scared of approaching him because i've never actually spoken to someone who's homeless before. But he was lovely, I asked him if he was okay and if their was anything I could get him and he just asked for a hot drink. So I took him to café nero and I got him a large hot chocolate, his name was Eddie. I really suggest that if you have a few pounds going spare after a shopping trip and you see a homeless person, that you should buy them maybe a sandwich or something. The feeling you get after doing it is so amazing, and lets face it you'd probably only spend that last couple of pounds on something that will rot your teeth ;)

Most of the time I don't have much to write about on my blog, so if you could comment things you'd like me to talk about.. like maybe you want a bit more insight into something, or maybe you don't understand something, just comment and i'll probably do a post on it :)) If I have something I know you want to know about then I can stop doing these crappy little updates, and just update you when something good/major is happening.

I've been on the transplant list for 14 months and 4 days now. HURRY UP LUNGS... THINGS TO DO, PLACES TO GO, PEOPLE TO SEE!
xxxx

Hospital&false alarm :(

If you have me on Facebook or twitter, you'll know I'm in hospital atm. Usually when I come in it takes a couple of days to get back to normal but not this time. I feel so rubbish at the moment, I'm in alot of pain as they think they maybe my portacath is ruptured. They've done various line-a-gram's, ultrasounds and x-rays and they still cant find any holes in the line, I just hope I don't have to have a new port. I don't want to go under anaesthetic unless I'm going to be waking up with new lungs! 

Weekend dramas!

So early sunday morning the nurse comes in to turn my feed off. Obviously I was confused because they're normally religious about feeds! But when my mum walked in at 1am i knew why. I'd had a call for new lungs. Unfortunately the lungs weren't for me (obviously or i don't think id be writing this right now haha). I was supposed to go to theatre at 7am, but at 7.30 the transplant co-ordinator came in and said that both teams thought the lungs weren't right for me. I was absolutely devastated, but what can you do aye? I'd rather wait a bit longer for those PERFECT lungs, then have lungs inside me now that might not work. Great Ormand Street is such a great hospital though, I'm sure they'll find me some lungs soon. (preferably before summer please ;) ) 

Post pals.

Since sunday i've been so fed up and tired, naturally. But I've had some really nice post from Post pals, they're an amazing charity that send post to poorly kids with life threatening/terminal illness'. It's amazing how hearing about someone else's visit to the zoo or a story about their holidays can cheer you up. I love receiving post, especially when I'm in hospital. I think you should all check the website out and send a card or a letter to one of the children. "post a smile on a sick child's face". Every single one of the children on there are so grateful for everything that gets sent to them.

I've been on the transplant list 1 year, 1 month, and 10 days. PLEASEEE keep your fingers crossed for me! 

Thats it really. hope you're all well x

My Bucket List! :)

Things I wont be able to do until AFTER my lung transplant:

Go to New York

Sky dive.

Bungee jump

Swim with dolphins.

Go to chill factor and airkix.


float in the Dead Sea.

have my picture taken infront on the Hollywood sign.


go to a festival

stay in the Plaza Hotel in New York, the one from home alone

Now things i'll be able to do regardless:

get 10,000 more people to sign the organ donor register

own a MacBook. √
And a canon camera, so I can take and edit decent photos

get on T.V.

Eat a full meal at Nandos.

DRIVE A CAR.

Go to London zoo

own an iPhone 5! √

successfully paint my dogs nails

Make my own flavour of ice-cream. Preferably tomato soup flavoured

get a top trend in one country on twitter. Maybe even worldwide?

learn to ride a unicycle

learn to play the ukulele

play the ukulele and ride the unicycle at the same time

go on a road trip (lasting about 3days and staying in a different hotel every night)!

Leave a random letter on a strangers windshield complimenting them, then hide just to watch their reaction.

mother a micro-pig for 1 day

Achieve my ideal weight of 50kg

WIN A FACEBOOK CONTEST

shopping spree on Oxford street

Have a double lung transplant, cause yano... YOLO

Go on every ride at Alton towers

Help out a Homeless person. √

Convince someone who's 'YouTube famous' (Sam pepper, Caspar lee, Marcus butler, Jack and Finn harries, Zoella, PointlessBlog, or MAYBE charlieissocoollike) to do a video about organ donation.

get 5 celebrities to follow me on twitter.

Read all 7 Harry potter books.

Harry potter studio tour.

Go to Cadburys world.

Try different cultures of food.

Catch up :)))

Hello! I've not updated my blog in so long. So here's that long overdue post..

My birthday!

On the 16th of march was my 14th birthday, finally! I was spoiled i'm not gonna lie. For weeks before I knew i had a present AND a surprise. Normally I would tell my mum what i wanted for my birthday, but this year she went off my bucket list. I didn't know where she'd got the present idea from so I was kind of scared incase i didn't like it. I DO like it! I got an iPhone5! I was sosososoooo happy, and it hasn't left my hand ever since. I got out of hospital the day before my birthday, so I got my Surprise then...

I got a pony! I knew I was getting her but I thought it would be later on the year when the weather gets warmer. It was a nice surprise :))) I'm aware she looks like a scruffy mare.. but she lives out and when my mum put her into the field she happily rolled in the wettest muddiest patch she could find. So she needs major TLC. She's called Mabel and I can't wait for the weather to get warmer so I can ride her.

Rays of sunshine!

When I first uploaded my bucket list, I had a lot of help from people all over the place on Twitter and Facebook etc. And eventually the children's charity, Rays of sunshine, saw it... They asked me to choose something on my bucket list and they would sort it out for me, I choose to get a Macbook Air, so here I am right now, blogging from my new Macbook ;) I love it! They also arrainged for a limo to pick me up to take me to the Trafford centre, and for a meal at Nandos with my mum and sister. 

Health-wise..

Health wise i've been great! Like I said I got out of hospital the day before my birthday and I'm still feeling good. I'm still not back at school and don't think I will be doing until after my transplant, or at least until I can see some sort of improvement in my lung function. I've now been on the transplant list for 1 year, 2 weeks, and 4 days. Come on lungs! 

Thats all I've got to tell you really!

Lizzie xx

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