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