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!
Sunday, 29 April 2012
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
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.
Monday, 23 April 2012
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
the past 2 months or so...
Monday, 16 April 2012
hello:) sorry i havnt written in a while!
well i havnt been very good since febuary, ive been on 2 courses of IV antibiotics & i have been in hospital because my lung function went down to 15%, when i was in there i got put on oxygen because my sats were staying at 88 and the doctor said i should atleast be at 92 so i was on 1 litre of oxygen & my sats went right up to 97 but i had to have it turned down to 0.7 so that was bit good news, i stayed there for 1 week & then i did a lung function & it had gone up to 18% and then they let me come home! i carried on my iv antibiotics at home but the bad news was that i still had to be on oxygen, so i had home oxygen, i felt more comfortable at home! then my 2 weeks was up of ivs, i didnt feel much better, im still on oxygen 24 hours a day also im in a wheelchair when i go out, i dont have as much energy as i used to. last monday i had a sleepover with 4 of my friends & it was well good but the next day i was so ill, i didnt eat, i couldn't move because i had no energy atall, but then mum did all my physio & then i did feel a little better & i did eat something! :) last thursday i had CF clinic that didnt go to well, my lung function was 14% but the doctor said that i proberly wont get it any higher now & also i lost abit of weight:( the past couple of days i havnt done much, im usually to tired to do anything, but im getting a little puppy next week!!!:D so i have to go shopping tomorrow with mum to get a few bits for him:) i dont know what im calling him yet though! hes sooo cute! this is him...
ill write next week when im in london for great ormand street hospital! :) xxxx
well i havnt been very good since febuary, ive been on 2 courses of IV antibiotics & i have been in hospital because my lung function went down to 15%, when i was in there i got put on oxygen because my sats were staying at 88 and the doctor said i should atleast be at 92 so i was on 1 litre of oxygen & my sats went right up to 97 but i had to have it turned down to 0.7 so that was bit good news, i stayed there for 1 week & then i did a lung function & it had gone up to 18% and then they let me come home! i carried on my iv antibiotics at home but the bad news was that i still had to be on oxygen, so i had home oxygen, i felt more comfortable at home! then my 2 weeks was up of ivs, i didnt feel much better, im still on oxygen 24 hours a day also im in a wheelchair when i go out, i dont have as much energy as i used to. last monday i had a sleepover with 4 of my friends & it was well good but the next day i was so ill, i didnt eat, i couldn't move because i had no energy atall, but then mum did all my physio & then i did feel a little better & i did eat something! :) last thursday i had CF clinic that didnt go to well, my lung function was 14% but the doctor said that i proberly wont get it any higher now & also i lost abit of weight:( the past couple of days i havnt done much, im usually to tired to do anything, but im getting a little puppy next week!!!:D so i have to go shopping tomorrow with mum to get a few bits for him:) i dont know what im calling him yet though! hes sooo cute! this is him...
ill write next week when im in london for great ormand street hospital! :) xxxx
my life so far..
Tuesday, 21 February 2012
when i was born 20.08.1998 there was nothing wrong with me, my parents had no clue i had cystic fibrosis, everything was fine untill i was 18 months when i was rushed to hospital becuase i had a prolapse, i had some test done & thats when my parents found out i had cystic fibrosis it was ovbiously a massive shock to them & they didnt know anything about it but they dealt with it & carried on.
when i was 4 i went to school & i did everything the same as others, i could do everything! never got out of breath, i was never ill, i was fine & that carried on untill december 2010 then everything went down hill, i was in hospital for 3 weeks having IV antibiotics & i was on oxygen & lung function went from 49% slowly to 25% and ive never got it any higher than that. in 2011 i was in hospital everytime i had my IV's really and my lung function was about 22% on october 31st i went for my annual review & thats when i found out i had to be put forward for a heart & lung transplant, it was the most horrible moment of my life me & my mum couldnt stop crying, & my dad was there just trying to calm us down, a few weeks later we came around about the idea of a lung transplant. 2nd december i had a feeding tube put into my stomach, i didnt want it but i knew i had to have to make me better & put on weight, and it took me about 2 weeks to get used to it, then it was christmas!:D which was nice to have all my family come round and spend the day with them. 14th febuary 2012 we had a phone call saying we had an appointment at GOSH hospital for my assessment for a lung transplant & weather im going to go on the list or not, we havnt had a date yet but were wating, they said on the phone maybe march or aprill.
thank you for reading i will write something else soon!:)
when i was 4 i went to school & i did everything the same as others, i could do everything! never got out of breath, i was never ill, i was fine & that carried on untill december 2010 then everything went down hill, i was in hospital for 3 weeks having IV antibiotics & i was on oxygen & lung function went from 49% slowly to 25% and ive never got it any higher than that. in 2011 i was in hospital everytime i had my IV's really and my lung function was about 22% on october 31st i went for my annual review & thats when i found out i had to be put forward for a heart & lung transplant, it was the most horrible moment of my life me & my mum couldnt stop crying, & my dad was there just trying to calm us down, a few weeks later we came around about the idea of a lung transplant. 2nd december i had a feeding tube put into my stomach, i didnt want it but i knew i had to have to make me better & put on weight, and it took me about 2 weeks to get used to it, then it was christmas!:D which was nice to have all my family come round and spend the day with them. 14th febuary 2012 we had a phone call saying we had an appointment at GOSH hospital for my assessment for a lung transplant & weather im going to go on the list or not, we havnt had a date yet but were wating, they said on the phone maybe march or aprill.
thank you for reading i will write something else soon!:)
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