a happy katie!

hey everyone! I thought I would write a post to let you know how I'm getting on with my new lungs!
well last time I wrote I was going up for my 3 month biopsy, I've had that and it came back with NO REJECTION! but I'm still growing pseudomonas! they aren't going to do anything about it as its only small, also I've gone back to school!! its so nice to be back with my friends again! but I've already had exams! -.- but I only went back for one week as when I went to gosh my white blood cells came back really low, so I had to stay off school and do injections to make them come back up! so I stayed of school for 3 weeks and went back last week! I haven't been able to do much because I've been revising and things but last week I went back to Great Ormond Street for my 4 month check up and my weight is now 40.85kg!!!!! and my lung function is 86%! :D I also went to winter wonderland whilst I was up there and it is truly magical! but it was FREEZING in the magical ice kingdom it was -16 degrees! when we got outside it felt like summer!!
last week a man wrote to me saying he would like to offer me tickets to go to the x factor final!! so I went to it on Sunday! it was amazing! and the best boy band in the world ONE DIRECTION was singing live and I could actually touch them! they came out the door next to us!! I went with my step mum Tracey, step brother Addy and Ella who has had a heart transplant, I met her through twitter, she is a lovely girl! and on Monday I went shopping in Brent Cross shopping centre and my dad bought me a pair of real uggs! they are so comfy!
im really looking forward to Christmas this year! my first year with my new lungs and It will be amazing! i bought a christmas tree bauble for my donor!! i can't thank them enough for letting me live my life! i will always be thankful for what they have done for me and what their family have done to make the selfless decision to save peoples lives! the bauble has got pink on it because its my favourite colour! i don't know weather my donor is a boy or girl and i never will! but one day i would like to write a letter to their family!

me and kirstie tancock (another cfer who has had 2 double lung transplants) was in the daily star and the sun! also was on the daily mail website!
and the cf trust rang my mum the other day and asked if i wanted to go on Daybreak on the 30th of december and i said yes, so i will travel up on the 29th and be on telly on the 30th, i don't know what time yet though,

here is the link to the daily mail online..

http://www.dailymail.co.uk/health/article-2525174/Best-friends-dying-lung-disease-receive-life-saving-transplants-DAY.html

here are some pictures…

winter wonderland

it was amazing!

me and ella

me and my friends

  

Us at the x factor 

 

The bauble i have for my donor.

when sam bailey won!

Living life with my new lungs!

hey everybody!!! I'm sorry i haven't been and wrote anything for a while but I've been quite busy with my new life!! its been great! I'm am so well! when i wrote last i had grown pseudomonas but we think that has gone now! I've finished the ivs and i finished the cmv medicine in IV and now i have it as oral! i don't have my picc line anymore! so I'm needle free! :D when i went to great ormand street on the 16th my lung function was 78% and my weight is 37.5kg!!! i have my 3 month post tx biopsy next month on the 13th and also im having my feeding tube out! :D I'm so happy that its finally coming out! I'm also having a 24 hour PH study test to see if i can come of some of my meds! :) i go back to school on the 4th november after half term, im pretty nervous haha! but im sure it will be fine. there is some bad news that i have too.. i have lost some of my hearing :( i had a hearing test and the answer is i need hearing aids so I'm having them fitted on the 31st of this month, i have lost it because some of the medications i was on has effected it, but I'm not on any medications now that can make it worse, i have lost the high and middle pitch, so i cant hear people saying S and T, i cant hear a high pitch alarm go of either so its pretty annoying! but i would rather loose my hearing than not be here because my life is great now! if i got really ill again like before(which i hope i don't) and i got offered another transplant i would defiantly take it, it has changed my life for the better so much! it was pretty scary yeah but in the end i got there! so anyone waiting for a transplant please keep fighting!! one day your chance will come and you will live your life like me! a couple of weeks ago i went for a meal with my friends for the first time since I've been better and i had so much fun! I've never laughed so much before in my life!! i did normal things teenagers do like take photos and laugh! last week i was looking at dogs online as i wanted a Chihuahua and i found the perfect little one!! so we rang up the lady and she said we could see her and when i saw her i fell in love with her straight away! so we bought her and now we have a little Chihuahua running around the house with missy! she is called Ruby! her and missy are always play fighting but ruby proper goes for missy!! she is not shy haha!

i go to great ormand street again on tuesday for a check up on wednesday and hopefully my lung function has gone up a little more!

oh yeah 2 saturdays ago we did a charity walk called the tarka walk for great ormand street hospital, caroline thorpe ward(children's ward at NDDH) and cystic fibrosis trust, it was 7 miles and i walked about half of it!! we don't know how much we raised yet but when we do i will let you know! these charities have been there for me all my life and i want to help them back! here are the links to the papers and news I've been on because of this walk..

http://www.itv.com/news/westcountry/2013-10-14/i-can-do-loads-of-things-now-lung-transplant-teen-walks-five-miles-for-charity/

http://www.northdevongazette.co.uk/news/katie_and_kirstie_inspire_tarka_trail_walkers_1_2883991

thanks for reading and here are some pictures.. 

Me and my friend Hannah at my late birthday meal!

Me and friends at the Tarka walk! 

My dog ruby! 

Me and ruby, oh and my nephew bailey in the background haha! 

Answers to your questions and a little update! :)

Hello, this blog is about answering some of your questions, I put a Facebook status up and twitter update to see if you have any and you did! so here is my answers..

1) now the you have had a transplant do they still consider you to have cf?

Yes I do still have cystic fibrosis as it is genetic, I inherited 2 genes from my parents that caused my cf, and unless there is a cure or gene therapy I will have always have cf and always be affected by it. 

2) does it feel strange not to have to do your chest PT and treatments?

I still have to do my physio for the time being as after surgery there will be quite a lot of mucus of the lungs so I have to get it up and because I have this bug called pseudomonas I need to get it all up.

3) after your operation and the time you had any for of artificial ventilation removed how did it feel to take a breathe on your own for the first time, did it feel strange or different?

To be honest it didn't feel any different at first as I was still on high flow oxygen, but in my head I was thinking wow I can actually breathe!

4) will cf try and effect your new lungs?

my body will try and reject the lungs that's why I'm on anti rejection tablets, and if you catch a bug like pseudomonas and it stays for too long then the lungs will eventually get damaged and be like they were before the transplant.

5) what 3 things will you look forward to doing with your new lungs which you couldn't have done before?

Well walking my dog is the first one! 

Going on holiday and being able to enjoy it 

Being a normal teenager!

6) how do you feel before and after your transplant?

Before my transplant I felt absolutely rubbish! every breath was a struggle, I couldn't do anything atall, not even laugh! but now I can do everything, I feel great now and I can laugh properly! I can walk more, I don't feel rubbish anymore, I feel what I believe is normal, like everyone else feels! :)

7 your greatest wish came true when you got your new lungs, what do you wish for now?
well all i wish for is to live a long healthy life really! and i wish to go to paris of course haha! ;) and to make lots of awareness for cystic fibrosis and organ donation!


thank you for all the questions, and now for a little update,
last week i went to great ormand street last week for a biopsy on wednesday and unfortunately i have grown abit of pseudomonas in the joint from my throat to my lungs, i have been started on IV antibiotics for 2 weeks and im carrying on with the cmv medicine until the 21st, but helen spencer said everything else looks good! My lung function has gone up to 64%!! and my chest x-ray looked okay:)

oh yeah you know i said i was going to the awards thing! ive only gone and won it!! i won child of courage! i have a trophy and im going to be in my local paper, i cant believe i won because the other 2 stories were so inspirational!

I've been really well apart from this pseudomonas bug so that's good! Ive started to see some of my friends now! I'm going to great ormand street again today for a check up tomorrow to do lung function and a x-ray again and to see the transplant team! 

Here are some pictures of the award and things.. 

Me all dressed up for the awards!

the car me and mum went in!

My award and the paper artical!

Home!

Hello everyone! since my last update I've just been recovering really! It will take me a couple of months to fully recover, now that I have diabetes I have to have insulin when I have lunch and tea which is going ok! i did my first lung function and that was 50%!! which is good for the first go! I started doing all my meds and stuff :) on the 29th they said we could start thinking about going home the week after! Paul aurora came back as we didn't see him for 2 weeks and there was alot of changes made! All the iv antibiotics was stopped and made to oral, I had to start nebulised colymycin, but because i have this bug called CMV I had to stay on this iv medicine for another 3 weeks so that set us back on going home at first and we thought I would of had to go back to my local hospital for 3 weeks! But thankfully they said BUPA could deliver it to us at home! :) so on Wednesday we went to the Italian wing to stay for the night, well actually for 2 hours sleep! because I had a few blood tests before we went to the Italian wing and when we got there the bloods came back and my potassium level were quite high so at 1:45am they rang us and said to go back to the hospital for more blood tests and we ended up staying there for the night, and the next day I was allowed home!!! It felt good to be going home!! I got home and there was balloons and banners up and my dog had a balloon on her collar, all my family was at my new house waiting for us to get home! we had a nice tea, the past couple of days has been really good, just being at home is great! I've seen a few people! today I went out for roast with my mum and her friend Debii for Debii's birthday! :) on Tuesday I go back up to great ormand street for a biopsy on Wednesday and hopefully come home that day but if not i will come home Thursday, I will be at gosh quite a lot now, taking it every week at a time! and I have a few tests to do like lung function, x ray and I will see the diabetes team :) 

Oh yeah.. My sister nominated me for an award for child of courage and next Friday I go to a party thing and go up on stage and get a certificate or maybe a trophy! And have a 3 course meal! I'm in the top 3 to win! So that's pretty cool! :) 

That's it for now really! Thanks for reading! xxx 

My welcome home cake!

The tickets to get In the meal!

my second chance of life!!!!!

HELLOOO!!!! im going to start right at the beginning! well on Saturday the 10th august at 7:28am I was fast asleep in dream land, at 7.29 I was woke up by my mum moving around in bed and the phone was ringing, my mum decided to leave it as it was a number she didn't know, I got up to do my IV's and then mum came back from the toilet and the phone rang again.. this time they left a message "hello angela this is grace from the transplant team we have a suitable match for lungs for Katie Marie please ring back as soon as possible" my mum looked and me said 'KATE ITS THE TRANSPLANT TEAM THEY HAVE LUNGS FOR YOU". you will not understand what went through my head at that point, the first thing I thought was NO this cant be happening even though I was an amazing thing I did not want to do it at that point I was so scared! my mum rang grace back and sorted out ambulance and stuff and I was just sat on my bed crying and I felt so numb! mum packed some things whilst I rang my dad and 2 sisters, but they couldn't understand me because I was just such a mess! my sisters just cried to and told me they would see me in a couple of weeks and everything was going to be ok! my dad came straight down as we waited for the ambulance it turnt up at 9:45 it was meant to turn up at 9:00 but It was running late and that was even more hard because it being 45 minutes late felt like torture, sitting there waiting!! the drive felt like forever, I just couldn't stop thinking what was about to happen, I was silent all the way to GOSH. we arrived at GOSH at 1:15 and grace and Rosanne was outside waiting for us with a wheelchair and then they took us to bear ward to sit while we were waiting to find out if it was a go ahead! we seen a anaesthetist and a surgeon, I had a nurse called Hannah who took my temp, checked my SATS, took some bloods, then my dad had to sign the papers and we waited until they said what was happening about 3:15 grace came in and said "it is good news, it is a go ahead and im going to let you take it it all in by taking you to theatre right now" my body went straight back to numb again, we left to go down to theatre and soon as we got there I said I couldn't do it! but the nurses were like "think of what its going to be like after" i said goodbye to my mum and i squeezed her tight and didn't want to let go because it could of been the last time i ever saw my mum and dad because this operation is a pretty serious operation me and dad went into the room where they put you to sleep, me and my dad was crying and i said i loved him and ill see him soon and then they put me to sleep, 7 hours later the operation was finished and i was taken to ICU at half 10 where i stayed asleep until sunday afternoon and then they woke me up and i had no idea what was going on, i just had these tubes coming out my mouth and in my stomach and the nurse was talking to me and i had to answer by writing things down, but i was getting stressed because they couldn't understand my writing haha, i mostly slept until Monday really and on Monday was the day i started to breath properly on my own as the breathing tube was removed and it didn't feel any different to me as i was still very tired and i was on high flow oxygen to keep my SATS up but that's normal, on Tuesday 13th i had to go back down to theatre to have my port taken out as they didn't take it out when i had my transplant for a reason i do not know, the next day i had my caffita out and that was rather painful haha! Thursday 15th i had my first chest drain out and they gave me some stuff to make me not feel it and i was abit happy! and then on Saturday i had my second and last chest drain out! then the next few days nothing really happened just stayed in ICU and I started to get up out of bed, sit in the chair next to my bed, walk a little bit down the corridor, but the first time I sat up was very hard, I was so dizzy and tired and my muscles ached for ages after! finally on Monday 19th I got moved to bear ward and my sisters came up to visit me for a few days for my birthday on Tuesday! I had a great birthday because my sisters were there, they brought loads of cards and presents up from people where I live! I cant thank people enough for all the support they have given me! for my birthday I had £270!! :) we went out for lunch in giraffe and it was so nice! I had to be back by 5 for IVs and stuff but it was a good day! on Wednesday I had my first biopsy and I went down to theatre at 10:30 and came back round about 1:00pm I felt so rubbish that day but I had my nurse from north Devon come to visit me for the day! it was really nice to see her! she bought me loads of presents from the ward on Caroline Thorpe ward and presents from my auntie Alison! I've been so spoilt! on Friday the doctor came in and said I DONT HAVE REJECTION! :D which is really good news, but were still waiting on the results from the cultures so at the moment im still on IV antibiotics as i need them to protect me from having pseudomonas in my new lungies! oh yeah at the moment i have diabetes as all my anti-rejection medicine and steroids are making my sugar levels go really high so i need insulin at the moment, were not sure if its forever until I've been lowered in my steroids, this week were starting to learn how to do my meds and tablets for when im allowed home! so that's one step closer to going home! they haven't said when I can go home but its only been 2 weeks since my transplant! i am so so so happy that i have finally had my new lungs! all i think about at the moment is my donor and there family! i am so thank full!! i cant wait until i can get home and do everything ive dreamed of! i can finally go out with my friends and enjoy myself and breathe easy!! im going to live my life to the full now! and im going to be the photographer i want to be! and go to paris! i want you all to know ill still be updating my blog and keeping you up to date even though it wont be much about my health anymore as its going to change a lot! but ill update you with all the things im doing with my new healthy lungs!


thank you all for reading my blog updates and all the support!! xxxxxxx

Me after transplant with a bottle of coke haha!

july 18th - august 3rd

hiyaa.. I've been pretty rubbish :( i finished IV's on the 23rd july and i felt rubbish 2 days after! :( i went to exeter shopping with my dad last weekend too! bought loads of new clothes and a cath kidston purse!! i love cath kidston!! :D but that night i got back i was abit over excited about getting all the new clothes and i was laying it out on my bed and over done it abit too much and i was so out of breath and then all of a sudden i was coughing up LOADS of blood! we didn't go to hospital but my mum rang my CF nurse and asked her what we should do and my nurse said just to stay home and if i cough up anymore then i should of gone straight to hospital as coughing up blood is quite dangerous! I've done it before so i knew what it was like and i didn't panic so much! but the taste of blood is absolutely disgusting! :( on monday my mum spoke to my doctor and he said to go in hospital for a few days on tuesday for IV's, we went in on tuesday, put my line in which went in straight away and drawn back blood good because its good to me! yeah.. had a few blood tests, weight done which was 30.3kg i think! cant remember properly because i don't remember everything haha! i went out to get tea with my mum and my dad drove us to kfc! :) my CRP is 70 which isn't to bad! wednesday was so boring!! i sat on my bed all day doing nothing because theres nothing to do in hospital is there? except annoy the nurses and tell the doctors you want to go home! haha!! thursday i was allowed home!! :) so glad i only had to stay in for 2 days! but he just let me out, i still don't feel great :( my mum is ringing my doctor again monday so we might have to change my IV antibiotics. hopefully i don't have to go in again :( oh yeah its my birthday on the 20th! i just wanted to let you all know as I'm excited haha!! :)

love katie xxxx 


1 year, 2 months and 10 days on transplant list..x

Great ormand street and RIP Lizzie!

hello guys, i don't even know how to start this! it has been a hard 14 days since my last update! first of all my CRP levels came back and they were 126!!! which is very high for me! so i had to go to the hospital to get checked over, and he said i looked well even though my CRP levels were so high, so he let me home again but i had to be seen by my nurse most days to check my CRP again, so i seen her and we checked it and it came down from 126 to 115 then to 76 and we checked it thursday and its finally down to 44! which is really good!! i'm eating and everything now! my weight is 30.7kgs again! :D it looks like im having IV's permanently from now on untill i get my transplant, just sometimes having 24 hour breaks so my port doesnt get to sore!


Rip lizzie 

and secondly.. my friend lizzie andrews gained her wings on Saturday evening! she had CF too, she was waiting for a transplant like me, lizzie was such a bubbly happy girl! she was just an amazing girl, i don't think ill ever get over the fact i wont get to ever speak to her again! she use to help me out playing animal crossing, i will never ever forget lizzie! but now she is with Lucy and they can chat away like before! i hope they are both with me when i finally get my lungs because i need there help to get through it! loosing Lucy and lizzie has been very hard! when i found out about lizzie passing away i was in Butlins for a mini break with my dad and when my dad said there was some bad news i didn't know what he was going to say but to say that she had died was just such a shock! i just burst into tears! but she fought for a long as she could! im going to miss her millions!! this is why people need to sign up to be a organ donor! Lizzie shouldn't of died so young! you could save up to 8 lives! don't take your organs to heaven, heaven knows we need them here!


Great ormand street
i went to great ormand street monday for a 6 month review and you cant go to London without a bit of shopping can you!! yeah so we left monday at like 12 and got there at 4ish then went shopping and mum and dad bought me lots of nice new clothes! and then had Chinese! :) on tuesday was the first day in great ormand street and i had a x-ray, bloods and lung function and my lung function is 16%!! in december it was only 12%! that is amazing for me! :D the x-ray showed the same as last time really so no change there. We finished at half 1 so we had lunch and then we went to LOOK at the London eye and had ice cream! :) we walked over this bridge but me an mum are afraid of heights so it was scary haha! we went back to our apartment and chilled for the rest of the night :) today i had to have a GFR test, it is a kidney test and you have dye put through a cannula in your hand and then you have blood test after 3 hours then 1 hour after that, i wont know the results for 3 weeks, we also saw dr. whitehead he is one of the transplant doctors, there isn't really any change just need to keep waiting for my new lungies! they said there have been offers but unfortunately i have been too small for them :( then we finished at half 1 again so we drove home and after 6 hours of my dad driving home we finally got home at 7 :)

ill probably write again soon! i promise i wont forget! theres not much that goes on thats why i don't write a lot haha!!

1 year, 1 month and 17 days on transplant list..x

the longest time I've been home! :D

im home! ive been home for a month now! :D we had to go up to see the doctor on the 6th junefor a check up as i have to go up twice a week just to get seen to make sure im okay, i got weighed and i was 29.7kgs! :( i had lost weight in 4 days from 30.15 to 29.7kg because i hadn't eaten properly! my appetite was completely gone! i was being sick too. so Dr Dalton(my doctor) said i had to have over night feeds again, and i had to have to put weight by the following Monday or else i would of been admitted, we did the overnight feeds for 4 nights but i was waking up being sick in the night and my stomach felt like it was going to explode and i was having really bad pains:( so we decided to have 3 fortisips before i go to sleep, and that was still playing with my stomach! so im back to square one having no feeds! Just drinking the fortisips during the day! I've been pretty well recently that's why I haven't been in hospital and to be honest I've had enough of being in hospital all the time! I know it makes me better but I'm just fed up of looking at 4 walls all time :( I will go in when I know I'm quite ill and need to go in though! I finished ivs on 24th June I was on them for a month, but on the 24th me and my mum was interviewed to be on the spotlight news for CF week!! The interview was hard and I did cry! It was on that Monday night but I didn't get to watch it as I was on holiday!! :) I went to butlins for the week! So that Monday was a busy day as I had the interview then went straight on holiday! I had a great week, we went on family bikes, went in the skyline most of the time to wins tickets and stuff and I got 6000 tickets!! I got a massive slipper to put both my feet into whilst I sit on the sofa and chill and also I got a lava lamp :) they were 3000 tickets each, we also went to town shopping, my step dad did a bungee jump haha! I had chest pain whilst I was away and I was very tired, we was going to come home a day early as I didn't want to stay and I was going to see my doctor, but in the end we stayed because I felt abit better later in in the day :) when we came home Friday I could finally watch the news and it was a good piece! everyone was writing to me saying they was crying and how strong I am! I just want to thank everyone who did message me! I look so different on telly and sound really different! Monday my nurse came to my house to make sure I was ok after the holiday and said I needed to start iv antibiotics Tuesday and I have! I was meant to go into hospital to start them but I'm well enough to stay home for them! :)

Don't think I have anything else to write! Just thank you for all the messages I get! it meant a lot!

1 year, 1 month and 3 days on transplant list..x

1 year on transplant list!

hello everyone! ive made my blog look abit prettier since my last update! :) when i wrote last time i was in hospital for about a week, then i came home for about 2 weeks and didn't really do anything just my usual, wake up do my nebs, treatment, tablets, eat, watch telly eat more food, physio, bed again and go into town some days with mum, i went for a check up on a Sunday and they said i could come home again but i went back up on Tuesday to stay in because i wasn't feeling good and my doctor wanted me to come in and plus i was on 2 and half litres of oxygen and we needed to get it down so i had to go on high flow for physio but i didn't do it for long as i now have a bit that links onto my oxygen so it humidifies the oxygen and puts moist into my lungs to bring up the mucus, and fortunately its worked and I'm on 1 and half litres! :) im still in hospital but at the minute im home for the weekend which is good! my co2 went up abit so we had to turn up the pressures on my bipap so now my co2 is down again, ive been on IV's for like a month now! my doctor said im probably going to be on IV's constantly and in hospital all the time soon! the team from exeter hospital came down to see the CFers in my hospital because they are involved in us now, and all i got told to do was put on weight!! its so hard though! im 31kgs at the minute but i would love to be 35!! when i have a feed i get so full and don't eat for the rest of the day so that doesn't really help! my appetite isn't very good at the minute so ive been having fortisips down my feeding tube! i will hopefully put on weight soon though! ive been on the lung transplant a year yesterday, its been such a hard year but ive got through it! i will fight it another year if i have to, i will do anything to get these new lungs! im going up to great ormand street hospital in the next couple of weeks hopefully for a 6 month check up and to ask them where my lungs are?!?! hehe. hopefully i get to go home for more than a couple of days soon!


1 year 1 day on transplant list..x

Plymouth and hospital..

I haven't wrote anything for nearly a whole month!! well everything is still going ok! Im still very dizzy all the time but the doctors have said it is because of all my IVs I have and it's effecting my inner ear and my balance so that sucks abit :( I went to Plymouth for the weekend on 3rd may as my wish with my mum and 2 sisters!! It was an amazing weekend!! we had room service both days, we went shopping friday and Saturday and we did face masks, went on the hoe and looked at the plymouth eye, we didn't go on it because we are all scared of heights, even though I've been on the London eye before, just with my dizziness I didn't want to go on it haha! On Sunday we went to the aquarium and seen some fish and sharks! then we came home after the aquarium as I was getting tired, I slept most of the car journey and when I got home I went straight to bed to chill, Monday i went town with my mum and then went to the park with sister and my my nieces and nephew, Tuesday I went to my other sisters for tea and to see my nephew bailey :) Wednesday i had an hospital appointment to see my doctor for a check up and because I'm feeling rubbish and my chest is rubbish at the minute he admitted me into hospital and that's where I am now! My crp is 93 :( I'm getting headaches again but my co2 levels are fine :( my chest hurts, I want cf to leave me alone really! but that isn't going to happen until I get my new lungies! yesterday i went out for the day with my dad and went to trago mills and did some shopping :P today I came home for the day but... I now have an IPad mini!! :) my mum and dad got it for me today and I am typing this on it now! I love it :)

11 months 12 days on transplant list..x

everything looks like its moving.

helloooo! :) I'm sorry i haven't wrote for a while i have been quite bad, BUT NOT WITH MY CHEST! I've had sickness and dizziness, I've had it for 2 weeks now but I'm finally eating again now, as i didn't eat for a whole week but i was having my feeds through my feeding tube, I'm still dizzy but the doctors think i have a inner ear infection and have vertigo, so I'm seeing a E.N.T doctor this week, I'm in hospital for a couple of days to have some IVs but I'm only staying until friday hopefully, as my chest is pretty good at the moment! i came to hospital last week to get checked over and my CRP was only 10! It hasn't been that low for a whole year! but I'm having IVs now so I'm well enough to go on holiday with my mum and 2 sisters on the 3rd may :)

ive had some good news too! :D I've been told i am on TOP of the transplant list! so as soon as their is some suitable lungs they are mine!!!!

I don't have much to write anymore as its always the same, come in hospital for IVs, go home for 2-3 weeks then come back in! i cant wait until all this is over and i can enjoy my life! run around after my dog, go to paris! maybe even america, go to college and do my photography course, just have fun. :)

10 months 15 days on transplant list..x

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#

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 :)

Merry Christmas, Happy new year & steroids.

MERRY CHRISTMAS, oh yeah & HAPPY NEW YEAR! :D
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! ;)