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Cystic fibrosis wont win!

Wednesday, 30 January 2013

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

Sunday, 20 January 2013

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!

IV's & physio

Saturday, 12 January 2013

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!


Thursday, 3 January 2013

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 :)

Merry Christmas, Happy new year & steroids.

Tuesday, 1 January 2013

hope everyone had a lovely Christmas, i had some great presents! it was a nice day to spend the day with the family & have a nice roast! with bacon and sausages! mmmm!

a couple of days after Christmas i started to feel tired and my oxygen went up to 1 litre, so we went up to see my doctor, he said i didn't need to have IV's yet because we were trying not to give me too many IV's as my body comes resistant to most of the antibiotics, so he started me on a course of steroids!! i havnt had steroids for 2 years and the last time i got really puffy face!! and i couldnt stop eating! well guess what? I CANT STOP EATING! i was 28.8kg when i went up to see the doctor and 4 days later i was 30kg! its good but my belly gets so full & i'm still hungry! my oxygen is back down to 0.6 litre now and i have more energy! :) i bought a new phone 2 days ago! i have now got a blackberry, i met up with some friends as well, it was nice to see them! ;D

for new years eve we just stayed in and watched the countdown on telly & had a buffet! & watched a film, was a nice night :)

hopefully 2013 will be the year i get my new lungs! and i can finally be a normal teenager! ;)

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