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pain, pain and more pain! & the sponsered walk! :D

Monday, 29 October 2012

since my last post i have not been well! i had to go to hospital to see a doctor and she wants me to have IV's again for 3 weeks! ive only been of them for 1 week!!! :( and also there was some talk about me starting BIPAP!:( i really didnt want to come that ill for it! i wanted to get my lungs before needing that!
ive had so much pain in my lungs today! hopefully my nurse doesnt say i need to go into hospital! and i really dont want to because in just over 2 weeks im going to butlins to see peter andre live! & i want to be well! :(

On the other hand, saturday was the sponsered walk to raise money for my electric wheelchair! it was such a good day! but i wasnt feeling well atall! but i wasnt going to let CF beat me that day, everyone was there for ME so i wanted to be there! all together there was 136 people!! the gazette came and took some pictures to! it was a really great day! we started at 12:00 and finished at about 3:30 because everyone stopped at the pub haha! i did half way(in my wheelchair) because it was freezing! so my dad picked me up and i went back to the start and waited for people to come back! i was suprised when eveyone turnt up! after that me and some of my family went for food, but i didnt eat cos i wasnt hungry and felt sick :( but i went sleep early that night and slept all night! i normally dont ! i normally wake up with pain and cant breathe but i didnt! :)
here are some pictures..

'round table' kindly donated £750!!

how many people did the walk!

ready to go! there was so many buggys!

my and my friends!
 5 months 1 week and 4 days on transplant list..x


Monday, 22 October 2012

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

Friday, 19 October 2012

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

Thursday, 18 October 2012

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! :)

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