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#

IV's & physio

Hiya, well since my last update i came down with a bang! I've had no energy for nearly a week now & i was in bed for like 3 days my oxygen saturation's were 91 and 92 on 1 litre of oxygen so I'm stable on 1 litre, i had to start IV's early as i wasn't getting better with just rest, i started them Monday and still stayed in bed all day & couldn't get up for school as i was up all night coughing and having chest pain :( so my nurse said i had to come up to see my doctor & guess what? I've been admitted into hospital!! on Monday when Jan(my nurse) took bloods my CRP (infection levels) were 82 & yesterday they actually went down to 59 so my IV's were working but just taking there time, i'm in hospital to do more physio, waaay more physio then i thought i would be doing, my doctor said i had to do physio every HOUR today! it was pretty hard! but they let me have a break after 5oclock haha! i went sleep because i was so tired after all that physio! hopefully i don't have to stay in for too long this time! i stayed home for 3 weeks! which is good for me!
thanks everyone for the support! it actually makes me smile how many people have been there for me & helping me! :D ill update you with more stuff soon, hopefully one day i will be saying I've had a transplant!

Clinic

hellllooooo, i had clinic today! it went good actually! my weight is 30.35kg which has gone up!:) my height is 146.6cm, I'm still on steroids, starting IV's next week, I'm going on meropenem & amikacin AGAIN! but i don't have to go in hospital:) I've been having really bad pains in my throat & they think its some kind of throat infection but when im on IV's they should sort it out.
i have this science exam next week so I'm trying to concentrate on my health & revision! but i know my health is more important! :)
that's about it really, just an update :)