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Friday, 29 March 2013

heyyyyy! my CRP went down from 46 to 28 and saturday it went back up to 49 because i caught a cold in hospital! and so did my mum! i had a x ray and a mri scan, the x ray was a little bit worse but thats expected and my mri on my brain was ok! :) i hated the mri scan, they played music but it was like old music and i could hardly hear it as the machine was so noisy! it took 20 minutes! i have to go see an ENT doctor now i had the scan to see if i can hear properly as some of the medicine can effect your hearing, also i did a lung function test and its 12% but it was 13% in december so it hasn't gone down much! The doctors put me on ceftazidime as i had a cold, I hardly ever get colds! so now im on colistin and ceftazidime. My weight was 31.85 last week bur now its 31.25 :( but atleast its still in the 31! i am now on bipap all night andnot using it for physio anymore as my co2 levels were quite high in the morning so it showed i needed it at night, the first night i tried it i could only use it or 2 hours, then 5 hours, then eventually i got up to 9 hours! :) and now i don't wake up with headaches anymore and my co2 levels are back down to 7! I'm home now finally! I came home on wednesday still on IVs and using bipap at home all night felt so weird! but i did it! :) my oxygen is great now! Using bipap had made me go from being on 2.5 litres of oxygen to 1.3/4 i was so scared to use bipap as i thought when it was time to go on that then things are very bad, i need a transplant quite bad yeah but being on bipap doesn't mean its over! It just means you need a little help! :)
now to the more exciting stuff., me, my mum and sisters have decided London is abit too far to go for me to be travelling so we are going to Plymouth for a couple day days in the first week of may :)
Thats it for now blog readers :P

9 months 29 days on transplant list..x

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