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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

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