R.i.p lucy wilton, rattling and battling

Since my last post.. everything has just broke down into pieces. On 22nd september i was at the barnstaple carnival, wasn't really enjoying it because it was quite boring and i was freezing, but my mum got a phone call and she got off the phone and just burst out crying, and straight away i knew it was about my friend Lucy, she had passed away that day waiting for double lungs! Her body couldn't fight anymore, when i found out it felt like my heart had just been ripped out and i couldn't breathe! Even though i never met her i was very close to her and spoke to her everyday until she started to got worse and didn't even have energy to text! At the carnival everyone was starring at us because we was crying but i didn't care! we went home straight away! i still cant believe shes gone! I still think 'aw I'm gonna text Lucy in a minute' but then remember and just sit quietly. I miss her so much!:( i really hope she like heaven and is looking over me and is gonna be there with me when i have my transplant! Lucy was the most funniest girl I've ever met! she always made me laugh and always cheered me up! on the day of her funeral we couldn't go because there was people with cystic fibrosis going to! and didn't want to risk it as on the transplant list, but me and my family set off lanterns for her and dressed up in pink and purple as they was her favourite colours, setting of the lanterns was so funny! 2 of them didn't go up cos they set on fire and NEARLY set a car on fire! but mine went up!:) i bet Lucy was there blowing everyone else's down and just let mine go up! hehe, i hope she liked them! I will never forget Lucy, she will always be in my heart!

2 weeks ago i had to go into hospital for iv antibiotics and physio, a couple of days later, i started to feel all dizzy and always tired and fell over quite alot, they said i had vertigo, a side affect from one of my antibiotics, but they couldnt take me off it because my body is resistant to most antibiotics, so one night my mum rang my cf nurse and told her what was going on and she said take me off the antibiotic staight away and we will find another one! so we did.. and a couple of days ago i started a new one called aztreonam, ive never had this before, but it seems be going ok, but i still feel quite dizzy, just going to wait until ivs have finished then see what im like after that. it has been a rough 2 weeks:(

last night i went and seen labrinth live! he was amazing! but it was boiling in the o2 acadamy i had to go outside and get some air! we had quite a good view! :) i had a day leave from hospital and going back today:( tomorrow i have anual review and gonna see if i can come home tomorrow! :)

hi everyone! sorry i havnt wrote anything for a while! i keep forgetting & when i go to do it, i get distracted!

well.. the last time i wrote i was waiting for my nephew to arrive & he has! he is called bailey, born on the 21st july! :) hes sooooo cute!
i was really well for couple of weeks! i went out everyday with my friends to the park because it was soo hot! i had loads of energy! but i started to get more tired and breathing worse around bout 16th august! so i started IV antibotics. But it was my birthday on 20th!:( so i wasnt well for it! i organised to go out for a meal with friends  a couple of days before & i did but that got ruined cos of the rain and the stupid peolple that worked there! on my actual birthday i spent it with family, my sisters, nieces and nephews, my auntie and cousin are lving with us at the moment so they was here to! :D it was a nice day but i was just so tired! a couple of days after that we realised i wasnt getting any better on the IV's i was on (colistin & ceftazidime. & tobramycin neb) so my mum rang the nurse, she said i had to go in to see the doctor. The doctor said i had to stay in hospital over the weekend & start to IV antibotics & change my nebuliser! so i stayed on colistin & changed ceftazidime to meropenem & changed my nebuliser to amikacin. it came to the weekend but the doctor wanted me to stay in even longer! so he just said i had to stay in untill i finished IV's! but as it went on i started to have side affects from the medicine! but i was ok! :) and getting better! they turned my oxygen down to 0.8 litres! which was good! :) they finally let me home the 12th! but yesterday i got rushed into hospital! after being out a couple of days!:( i had alot of sharp pain in my chest that ive never had before! it was on the right side! it was hurting so much! i had an x-ray and they said that was fine! which is weird! but the doctor said because my lungs are so bad i will get alot of pain now!:( so they said just keep taking pain relief! i had to stay in for the night though just to make sure i was ok! i still have the pain now just comes and goes! but as long as i can breathe i dont care. im home now and in bed resting :)
oh yeah.. im not going back to my normal school now as the doctors said it will be to much for me and i dont want to get any worse! i was looking forward to it but i have to do what the doctors say cos they know best! :) i want to stay well so i can have my new lungs when they come!
been on the list 15 weeks 3 days now! im hanging on in there! :)

my gorgrous nephew Bailey! :)

my birthday presents from my mummy :)

 

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