an update

Well since i last wrote i feel soo much better! ive finished my iv antibiotics and now feel great! and am waiting for my baby nephew to arrive! he was ment to come on the 18th july but he hasnt! but hopefully soon! oh yeah.. i just finished hospital school for six weeks holiday! but i wont be going back there because... Ive decided to go back to my normal school!:) im quite excited to go back and see all my friends! Im going with my oxygen and wheelchair. So yeah.. Not much has happened but im quite well at the moment and just waiting for my new lungs!:) xx

Antibiotics

Well I started ivs last thursday and then that night i went really ill! i had a temperture, my oxygen was low, felt dizzy and sick:( so mum rang the hospital and they said just to stay home and drink lots and have paracetomal, later on my temp went down abit and i felt a little better, but in the morning mum woke me up saying were going up to the hospital to get checked over. i felt soo ill:( so went hospital got checked over and they said i had to stay in the weekend:( which was horrible and boring! But it was the best pleace to be! i came out of hospital monday and and i still dont feel well so today im staying in bed all day!:( well exept to do physio and go to the toilet! my mum has texted the nurse to see if i am on the right iv antibiotics, and what to do because i feel so tired and drained:(

My wish day!!:) 28.06.2012

I had to wake up at 7:00am! And I didn't get any sleep the night before because my sister slept over for my special day, and she slept in my room with me and she snores so loud! Haha! I had such a good day with my mum and 2 sisters. We got picked up in a hummer! And taken to Exeter, then we walked to the apple shop to go pickup my iPad and we got there and ALL the staff started to clap! I was soo embarrassed! We stayed in the apple shop for about an hour and abit, because they shown me what to do with my new iPad!:) after we left apple, went went shopping!! We went to new look and I got some new clothes! And then went to HMV and I got Justin bieber album!:P and then it was time to go for lunch!:) we went to a restaurant called Harry's, it was nice food:) after lunch we went for more shopping for an hour because then it was time to come home!:( but we came home in the hummer again!:) but I ran out of oxygen on the way home so we was in a rush! But I was still okay I just put the oxygen back on at home:) I had an amazing day!!

butlins & make a wish foundation!:)

on the 31st may my mum got a phonecall, me and my physio was just chatting whilst she was on the phone. she got of the phone and screamed, YOUVE GONE ACTIVE ON THE TRANSPLANT AS FROM TODAY! and i couldnt believe it! my heart was racing, me, mum & helen(physio) started to have a little cry. it felt weird because at any moment i could get that call! its scary but exciting at the same time!! :)

the day after i was discharged from the hospital even though i still had the pneumothorax, but i was soo happy to go home and into my own bed! we decided i was going to go into hospital every 4 weeks for IV antibiotics and stay in for 2 weeks. i suppose thats alright, i just want to keep well for when i get the call:)



18th june - 22nd june BUTLINS TIME!
i had such a good holiday with my family, we went on the arcades, on family bikes, went to the market & done some shopping! :D it was nice to spend some time with my auntie alison because im so close to her and lewis!(my cousin with cf too) even though me and lewis cant be together for too long we still went on holiday together because everytime we was with eachother we was out in the open so we cant catch eachother germs. on thursday i started to feel unwell and had alot of pain in my ribs, so my mum rang my nurse and she said when i got home on friday to go straight up the hospital to get checked, so we went there and had an x-ray to make sure it wasnt the pneumothorax and it wasnt!:) the pneumothorax has nearly gone! which is good news! the doctor wasnt to worried about the pain i was having because i was clinicly well, just had pain, he said i had to take 400mg of pain killers every 6 hours untill the pain was gone, and thankfully its gone now!:)

Im so excited for thursday because ive got my make a wish foundation thing!
me, my mum & my two sisters are being picked up in a LIMO from my house taken to exeter to pick up my ipad 3, go for lunch and then do some shopping!! :) its going to be a good day, and its gonna be one day i dont have to think about the transplant all the time and wondering when im going to get the call! and get to spend the day with just my sisters and mum! no one else!:)


i will write more soon!:)

the past month.

sorry i havnt writ anything for the past month, i havnt had time really:(

well.. after great ormand street i got my puppy, i got a girl instead of a boy, shes called missy!:) i was ok for a couple weeks. & then it came to the time to have IV's, and me and mum decided to have them in hospital & plus Great Ormand Street wanted a few more tests done before i could actually get onto the lung transplant list.. so we came in it was ok for the first week doing physio, antibiotics, & all the stuff i needed too & then monday i had to have a PH study test for 24 hours and after they put it in i had to go down for a x-ray to make sure it was in the right place, & then all of a sudden a physio came in and said i couldnt do my flutter& couldnt use the bird because they noticed that i had a pneumothorax in my top right lung(collappsed lung!) ive had it for a month! we didnt know it! i feel the same as i normally do :/ & i had another x-ray yesterday and they said it had got slighty smaller so they was gonna speak to GOSH to see what to do about it, so GOSH said tohave another x-ray friday & see if its got smaller or bigger. if it has got bigger then they would have to fit a chest drain in!:( & if it got smaller that would be great. but they also said that i wont be able to go home untill its completly gone! so we might be in here for while!:( its soo scary going threw all this.. sometimes i just want to burst out & cry but then i just tell myself.. when i get my new lungs it will all be ok! :)

xx

the other 2 days in london!

Tuesday was so hard & tireing, i didnt get much sleep the night before, so i was really tired the next day! i had to be in the hospital for 9:00am for a blood test! & i had to have a canula in but they couldnt fit it in a vain so they tried 4 times! i realy hate needles:( i had to have lots of tests that day!:(

this is what i had to do..
- fasting bloods + blue canula
- psychlogist
- dexa scan
- abd. US + chest xray
- ENT
- chest CT

i was so tired! i couldnt eat before my bloods so i was hungry aswell:( that was was the worst day i had in a while! i was glad to get it done with, after all that i needed to go back and get some rest! & have tea. but i met up with a girl who had a lung transplant that ive been speaking to for a while! shes very helpfull & she answers anything i ask!

WEDNESDAY!
today i had to see the consulant, was was there for about an hour, he asked me some questions & then the main one. he asked me if i was sure i wanted to go onto the lung transplant list & i said yes im sure, i want my new lungs! i want to be like any other girl! i want to walk & not get out of breath! then he said ok. & then said... ive got onto the lung transplant list :) :) :)

me and my family are so happy & we needed to take it all in before i writ this :) x

the first day at great ormand street hospital.

today has been so tireing it was the first day at GOSH & we had to be there by 10 and finished at 5 our plan for today was..

- Transplant talk
- echo & ECG
- lung function
- clerking(talking to doctor about medical history)

it was a long day & alot to take in, had a little cry but it was because i had to take everything in because there is so much!
after we finished at GOSH we went for tea at mc donalds:P & then came back to our room/flat but then there was just something that happened...


THE FIRE ALARM WENT OF!! me and mum are sleeping on the 7th floor! and we couldnt get the lift down or go down in my wheelchair & mum couldnt carry me so i just ran right down 3 flights of stairs but then i couldnt go no further i was too out of breath. so a lovely man came and carried me down the rest.
we got to the bottom & they said we could come back up it was just a mistake!

im tired now so just chilling in the flat! xxxxx