home!:)

Ive been home since friday and its been so nice! been doing all my IVs and all my physio! but my mucus doesnt want to come of my lungs!:( i finish my ivs tomorrow so thats good!:)

next week is the sponsered walk i organised with my sister and dad, its to raise money to get me an electric wheelchair and what ever money we have left we will give it to my cf nurse and the childrens caroline thorpe ward in north devon district hospital. But where we are getting the wheelchair from has let me borrow the chair for the week! its so cool! I still do all my walking and physio but its so much better with an electric one, so i dont have to go everywhere with my mum, even though i love going everywhere with her!:) i cant wait for the wak! 130 people are doing it! It will be good afternoon and a laugh!

im going to write on my blog more often now! cos i used to write on it like once a month but i will try and write more!

Annual review

I had annual review today, it actually went ok for once! :) we was talking about antibiotics and physio and she said i have to have physio more and to see my own physiotherapist once a week, and she was talking about this machine that you go on in the night, it wasn't bipap but she didn't want me to start anything like that because i recently had a pneumothorax and thats what could help a pneumothorax come. I also met my new consultant, he was really nice:) and learned some new physio techniques. I have to have a glucose tolerant test, GFR, and starting vitamin K. My weight is 30.45kg, i didn't have to do lung function as was quite busy!

IM ALLOWED HOME TODAY:) and do home IVs, finish them on monday!:)

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!!