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1 year on transplant list!

Saturday, 1 June 2013

hello everyone! ive made my blog look abit prettier since my last update! :) when i wrote last time i was in hospital for about a week, then i came home for about 2 weeks and didn't really do anything just my usual, wake up do my nebs, treatment, tablets, eat, watch telly eat more food, physio, bed again and go into town some days with mum, i went for a check up on a Sunday and they said i could come home again but i went back up on Tuesday to stay in because i wasn't feeling good and my doctor wanted me to come in and plus i was on 2 and half litres of oxygen and we needed to get it down so i had to go on high flow for physio but i didn't do it for long as i now have a bit that links onto my oxygen so it humidifies the oxygen and puts moist into my lungs to bring up the mucus, and fortunately its worked and I'm on 1 and half litres! :) im still in hospital but at the minute im home for the weekend which is good! my co2 went up abit so we had to turn up the pressures on my bipap so now my co2 is down again, ive been on IV's for like a month now! my doctor said im probably going to be on IV's constantly and in hospital all the time soon! the team from exeter hospital came down to see the CFers in my hospital because they are involved in us now, and all i got told to do was put on weight!! its so hard though! im 31kgs at the minute but i would love to be 35!! when i have a feed i get so full and don't eat for the rest of the day so that doesn't really help! my appetite isn't very good at the minute so ive been having fortisips down my feeding tube! i will hopefully put on weight soon though! ive been on the lung transplant a year yesterday, its been such a hard year but ive got through it! i will fight it another year if i have to, i will do anything to get these new lungs! im going up to great ormand street hospital in the next couple of weeks hopefully for a 6 month check up and to ask them where my lungs are?!?! hehe. hopefully i get to go home for more than a couple of days soon!

1 year 1 day on transplant list..x
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