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Great ormand street and RIP Lizzie!

Wednesday, 17 July 2013

hello guys, i don't even know how to start this! it has been a hard 14 days since my last update! first of all my CRP levels came back and they were 126!!! which is very high for me! so i had to go to the hospital to get checked over, and he said i looked well even though my CRP levels were so high, so he let me home again but i had to be seen by my nurse most days to check my CRP again, so i seen her and we checked it and it came down from 126 to 115 then to 76 and we checked it thursday and its finally down to 44! which is really good!! i'm eating and everything now! my weight is 30.7kgs again! :D it looks like im having IV's permanently from now on untill i get my transplant, just sometimes having 24 hour breaks so my port doesnt get to sore!

Rip lizzie 
and secondly.. my friend lizzie andrews gained her wings on Saturday evening! she had CF too, she was waiting for a transplant like me, lizzie was such a bubbly happy girl! she was just an amazing girl, i don't think ill ever get over the fact i wont get to ever speak to her again! she use to help me out playing animal crossing, i will never ever forget lizzie! but now she is with Lucy and they can chat away like before! i hope they are both with me when i finally get my lungs because i need there help to get through it! loosing Lucy and lizzie has been very hard! when i found out about lizzie passing away i was in Butlins for a mini break with my dad and when my dad said there was some bad news i didn't know what he was going to say but to say that she had died was just such a shock! i just burst into tears! but she fought for a long as she could! im going to miss her millions!! this is why people need to sign up to be a organ donor! Lizzie shouldn't of died so young! you could save up to 8 lives! don't take your organs to heaven, heaven knows we need them here!

Great ormand street
i went to great ormand street monday for a 6 month review and you cant go to London without a bit of shopping can you!! yeah so we left monday at like 12 and got there at 4ish then went shopping and mum and dad bought me lots of nice new clothes! and then had Chinese! :) on tuesday was the first day in great ormand street and i had a x-ray, bloods and lung function and my lung function is 16%!! in december it was only 12%! that is amazing for me! :D the x-ray showed the same as last time really so no change there. We finished at half 1 so we had lunch and then we went to LOOK at the London eye and had ice cream! :) we walked over this bridge but me an mum are afraid of heights so it was scary haha! we went back to our apartment and chilled for the rest of the night :) today i had to have a GFR test, it is a kidney test and you have dye put through a cannula in your hand and then you have blood test after 3 hours then 1 hour after that, i wont know the results for 3 weeks, we also saw dr. whitehead he is one of the transplant doctors, there isn't really any change just need to keep waiting for my new lungies! they said there have been offers but unfortunately i have been too small for them :( then we finished at half 1 again so we drove home and after 6 hours of my dad driving home we finally got home at 7 :)

ill probably write again soon! i promise i wont forget! theres not much that goes on thats why i don't write a lot haha!!

1 year, 1 month and 17 days on transplant list..x

the longest time I've been home! :D

Wednesday, 3 July 2013

im home! ive been home for a month now! :D we had to go up to see the doctor on the 6th junefor a check up as i have to go up twice a week just to get seen to make sure im okay, i got weighed and i was 29.7kgs! :( i had lost weight in 4 days from 30.15 to 29.7kg because i hadn't eaten properly! my appetite was completely gone! i was being sick too. so Dr Dalton(my doctor) said i had to have over night feeds again, and i had to have to put weight by the following Monday or else i would of been admitted, we did the overnight feeds for 4 nights but i was waking up being sick in the night and my stomach felt like it was going to explode and i was having really bad pains:( so we decided to have 3 fortisips before i go to sleep, and that was still playing with my stomach! so im back to square one having no feeds! Just drinking the fortisips during the day! I've been pretty well recently that's why I haven't been in hospital and to be honest I've had enough of being in hospital all the time! I know it makes me better but I'm just fed up of looking at 4 walls all time :( I will go in when I know I'm quite ill and need to go in though! I finished ivs on 24th June I was on them for a month, but on the 24th me and my mum was interviewed to be on the spotlight news for CF week!! The interview was hard and I did cry! It was on that Monday night but I didn't get to watch it as I was on holiday!! :) I went to butlins for the week! So that Monday was a busy day as I had the interview then went straight on holiday! I had a great week, we went on family bikes, went in the skyline most of the time to wins tickets and stuff and I got 6000 tickets!! I got a massive slipper to put both my feet into whilst I sit on the sofa and chill and also I got a lava lamp :) they were 3000 tickets each, we also went to town shopping, my step dad did a bungee jump haha! I had chest pain whilst I was away and I was very tired, we was going to come home a day early as I didn't want to stay and I was going to see my doctor, but in the end we stayed because I felt abit better later in in the day :) when we came home Friday I could finally watch the news and it was a good piece! everyone was writing to me saying they was crying and how strong I am! I just want to thank everyone who did message me! I look so different on telly and sound really different! Monday my nurse came to my house to make sure I was ok after the holiday and said I needed to start iv antibiotics Tuesday and I have! I was meant to go into hospital to start them but I'm well enough to stay home for them! :)

Don't think I have anything else to write! Just thank you for all the messages I get! it meant a lot!

1 year, 1 month and 3 days on transplant list..x
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