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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

the exciting life of being in hospital basically all the time.

Friday, 15 March 2013

Helloooo sorry i haven't wrote for a while.
sooo... i finished my last course of IV's on the 4th and i still didn't feel myself but my doctor said to still come of I'V's and go on a course of co-trimoxacole and he thinks im becoming resistant to  meropenem and amikacin which isnt good :( and i still felt unwell on friday so i had to go up to the hospital to get checked over as I've been getting LOADS of chest pains :( but my bloods were fine! my CRP was only 28 i think so they let me home. I'm came back in hospital yesterday as i have to have another course of IV's but this time im on colistin IV & tobramycin nebuliser. Last night i took some beater blockers to make my heart rate slow down as my heart rate is quite high and they've worked abit so thats good :) my CRP is 46 so i have an infection but its not as bad as last time thankfully! and today they took blood for a gas, this tells us what my carbon dioxide levels are, they are usually around 6 but mine is 8.9 so i have to use my bipap more often and soon i will have to use it at night time, but its so hard to get use to! the mask has to be really tight and now they've added a humidification bit so it can add moisture into my lungs to make it easier to bring up mucus and that is warm so its really hot under the mask! but i will get use to it!! :)

oh yeah.. I put in a wish at 'Raise of sunshine' and i wished to either
- meet one direction
- have a apple mc laptop
- go to london with mum and sisters
and the day before i came into hospital they rang and said.. I COULD MEET ONE DIRECTION ON SUNDAY IN LIVERPOOL!!! but.. Because im not well enough i cant go!! :( :( and plus loverpool is quite far away so i would get so tired in the car but i was soo gutted when my mum and nurse said i couldnt go :( BUT I'm getting a signed one direction picture sent to me!!! so i chose for me, my mum and 2 sisters to go to London for a weekend and were going to go on the London eye, go to madame tussauds and GO SHOPPING! they're giving me spending money to and were staying in a hotel and they pay for food to! they need 2 weeks notice so were gonna wait until I'm better :) 

ill update again soon, thank you for the messages and support

9 months 15 days on transplant list..x
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