hospital

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.

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

Home!

Well they let me come home! :D i came home on Friday and on Friday night i went to work with my dad delivering mcdonalds haha! at the moment my mucus isn't coming up, I've tried everything! even the new medicine mucodyne isn't helping, today my bipap machine is coming so i have my own machine to keep at home, I'm still feeling tired and have no energy pretty much all the time but thats because my lungs are so poorly. Im still on IVs and finish them Monday or i might have to stay on them longer as my nurse came out to take blood for my CRP levels ad they've gone up a little bit and the doctor said i could go back into hospital but i want to stay home as i don't feel that poorly but if i got worse then i would go in. Today is my dog missy's 1st birthday!! :D i bought her a card and some treats haha!

well thats all really, hopefully soon i will have my new lungs!!

9 months today on transplant list..x

bipap and weight gain!

i tried bipap today! its actually ok when you put it on and get used to it, but it takes a lot to get used to it though, it feels like when your walking against the wind and it catches your breath but with bipap you have to go with it, once it knows your breathing pattern it goes along with you so its not so bad. Also i have put more weight on!! :D I'm 32.1kgs now! :D i cant believe I've put on 2kgs since christmas! When my doctor came to see me today, he said if i get along with bipap and i feel better i can go home friday, but not with bipap as I'm not needing it at night time just for physio, but there funding the money to get me one for when i do need it. Tonight i started a medicine that will loosen my mucus, its called Mucodyne so hopefully that will start to work soon.

this is the bipap machine.

8 months 20 days on transplant list..x

Another hospital visit...

Hello there my lovely blog readers! :) when i finished IVs last time i stayed really well! i went out to town with my mum shopping(i go everywhere with my mum) my nieces and nephews came round a few times, i went out delivering mcdonalds with my dad as he delivers it! ;) i love it! i think its actually so fun! and because i can get mcdonalds everyday if i wanted ;) i had a check up with my doctor a week after i left hospital to check i was ok and i was so i went home again and stayed home another week :) then my oxygen started to go up more and more and i was getting some chest pain so my nurse came out and my physio and they said i had to come in hospital! oh yes I'm back in hospital again!!! :( i came in yesterday to start IV meropenem and amikacin. BUT!! my weight has gone up and i am now.... 31.6kgs!! i haven't been this weight since 2010!?! so thats good :D I had my bloods checked and my infection levels were only 24 so they dont know whats actually going on! im on 2.5 to 3 litres of oxygen at the moment so tomorrow i am going to try out bipap, for peole who dont know what bipap is: bipap is a breathing apparatus that helps more air get into my lungs, so basically it helps so it basically gives me a break of trying so hard to breathe, normally you have it over night but at the moment i dont need it over night so im doing it for physio. 

today i went to see a hospice as my doctor said me and my mum should go there for rest bite! the place we went to was really nice and theres alot for me to do there! so we are thinking about going there for a couple days :) 

ill update you all again soon! thank you for reading my blog xx

8 months 19 days on transplant list..x

Cystic fibrosis wont win!

heya its Katie again :D so CF has been testing me these past couple of weeks! Its thrown high temperatures and infections at me but i chucked them back! As my sister said.. The doctors said i had a line infection AGAIN! But thankfully it wasn't a fungal infection so i didn't have to have it out! they started me on anti fungal casperfungin medicine before they found out it wasn't a fungal infection just to stop it if it was, and I'm still on that, they started me on oral ciprofloxacin and that has worked and my infections levels have gone back down to 50! :) but my oxygen is staying at 1.5litres and 1litre at night! it just doesn't want to go back down:( but i suppose i knew this would happen eventually and it has. In the update my sister wrote she said i had to have a 24 hour heart monitor.. when i got took of that the results came back within hours and and had quite a lot of ectopic beats but they that was probably because i had quite a bad infection. a couple of days later i had to have a 48 hour heart monitor and they haven't got back to us on that one but if it was bad they would of said something. Monday they finally said i could come home! And they weighed me and i put on weight i am now 31.7kg!! When i went into hospital i was 30.35kg! it was so nice to come and sit on my sofa instead of a hard bed all day everyday! but I'm not sleeping very much as my oxygen is going up and down:( but tomorrow I'm hopefully trying to get out for a bit and get some fresh air:) i finish my IV's and casperfungin on friday and i start this new oral antibiotic called co-trimoxazole so hopefully that will make me stay of IV's longer :) 
Thank you soo much everyone for the comments and people who have wrote to me on facebook!

tomorrow will be 8 months on the transplant list!

Update From Katies Sister

Hey :) I'm Katie's sister and she asked me to update her blog as she was to tired and wanted you too all be updated,
since her last blog Katie has fallen really ill, her CRP (infection) levels have gone right up from 50 to 96 then from 96 to 76 and now they are back up to 98! She has an infection in her port which her IV'S go through but doctors aren't sure what sort of infection it is, new IV's started today and blood results will be back tomorrow, so we will have more answers then! Katie has started having heart palpitations so was on a heart monitor for 24hours! A few nights ago she tried an overnight feed but since then has stopped as its to much for her! she had a few good days doing physio every hour and beating personal targets with walking and on special physio breathing equipment! Last night CF tested Katie, her oxygen went up to 15litres!! and required a high dependency nurse sat with her! her heart rate went up to 186! she is in bed resting and recovering at the moment! she is still fighting and going strong! check out her support and awareness page! http://www.facebook.com/StrengthPrayersForKatie#