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My Nightmare Before Christmas

Sunday 21 December 2014

Helloooo.

In my last blog post I said I had cold and a bit of a cough, well that cough got worse and I went to my first clinic appointment back at my local hospital and my doctor decided to admit me into hospital for 2 weeks! yes just before Christmas! :( my lung function has dropped and i am bringing up green mucus. I started IV Colistin and Ceftazidime, I've been doing some intense physio to get the rubbish off my lungs! I don't feel much better but the IVs are making me so tired and I don't have any energy. I had a Midline in yesterday(Saturday) I was awake when i had it done(I've never had one in a awake before) and I hated it, but I've been through worse! they tried to go for a PICC line but its wouldn't go around so they stuck to a Midline, i'm hoping I can go home for Christmas Day to spend with my family! The children's ward at the hospital is so christmassy i love it, but i would rather spend my Christmas at home :P 



But I hope you all have a wonderful Christmas!




As always, thank you for reading
Speak soon
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Winter Wonderland & My New Car

Tuesday 16 December 2014

Hello.

Last Tuesday i went to Winter Wonderland with my dad, Tracey(step mum), sister and step brother. Me, mum and dad went last year but Tracey wanted to go this year and of course I would want to go! it was the same as last year but i think it's just amazing! I went on a fair ground ride with Tracey! :O I never go on rides but i really wanted to go on and I dragged Tracey on with me! :P I wouldn't stop laughing and she said a lot of swear words whilst on it! I bought my mum a pink candle for her bathroom(she loves candles) and I also bought some voodoo dolls. Wednesday we went to Westfield shopping centre(best place ever).

Thursday was the day I picked up my car from Truscotts, I have a new Peugeot 108, I have it on mobility because after transplant it is still a battle with walking and i still cant walk very far, I get so tired and another reason is that doctors advise you not to travel on public transport. My dad is teaching me how to drive until I'm 17 and then do some lessons with a driving instructor and hopefully do my test! well I've got to pass the theory first! I did my first driving lesson friday and it went really well for my first go ;)

I have a cold and a bit of a cough at the moment so i have been put on co-amoxiclav, hopefully this will sort me out, no one wants to be ill on Christmas Day!

Here are some photos..

 Winter Wonderland...








My Car...




As always, thank you for reading
Speak soon
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Emily Icke's 1 Year Transplant Anniversary Party

Monday 8 December 2014

Heya.

Friday 5th December: Me, mum and my step dad travelled up to Aylesbury for a very special event! it was my lovely friend Emily Icke's SUPRISE transplant party! it was on saturday but we thought we would go up on Friday.

Saturday 6th December: It was a great night and when Emily came in she was so shocked and happy, and shocked that we were there! it was lovely to finally meet Emily and David(Emily's husband) i also met Charlotte Davies, Victoria Glen and Vanessa Bradley who have had transplants too! David organised it really well and every thing that was done was done perfectly! All the money raised will be going to 3 charities: Live Life Give Life, Cystic Fibrosis Trust and Royal Brompton & Harefield :) 

We are thankful to Emily's donor who saved her life, and will always be thinking of them and their family for making that decision. Live Life Give Life.

Here are some photos of the night…

Me and the beautiful Emily Icke :)
Me and Charlotte :)

Me, Charlotte and Victoria :)

Kirstie, Charlotte, Me, Victoria, Emily and David :)


As always, thank you for reading
Speak soon
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The Christmas Tag!

Friday 28 November 2014

Hey guys!

So because i love christmas so much i wanted to do the christmas tag.. its answering questions about some of my favourite things to do/watch/eat at christmas! I've already finished my christmas shopping and put the dec and tree up because we was going to GOSH for my fundo but has been cancelled :( (At least i can eat my christmas dinner) anyway back to the tag.. Here are the questions…


1. What is your favourite Christmas movie?
i love a few Christmas movies e.g. Home alone, The santa clause, Love actually, The grinch. But i have to say my favourite would probably be ELF! its just so good and gets every one in the christmas spirit!

2. Do you open your presents on Christmas Eve or Christmas morning?
we open our presents on Christmas day, but sometimes mum lets me have a present on Christmas eve :)

3. Do you have a favourite Christmas memory?
Well just having my family around makes so many memories, i love it. Every one is just so happy and excited, especially my nieces and nephews! and when i go to my dads house, he does a little buffet for us! ahhh i just love Christmas!!

4. Favourite festive food?
it has to be the Christmas dinner!!! and maybe all the chocolate you can eat ;)

5. Favourite Christmas gift?
i love all my gifts every one gets me! but my favourite gift of all every year is being alive! i am so thankful to my donor and their family for letting my live my life again! <3

6. Favourite Christmas scent?
Last year i had a real Christmas tree in my room and i loved the smell of that! and i love the smell of Christmas dinner! :P

7. Do you have any Christmas eve traditions?
We get everything ready for Christmas day, watch a Christmas film, and of course eat chocolate! :)

8. What tops your Christmas tree?
We have a Star every year on our Christmas tree.

9. What is your Favourite Christmas song?
This is such a hard question! okay.. i think it would be.. 'I wish it could be Christmas everyday' i absolutely love that song and of course i actually do wish it was Christmas everyday!!

10. What's the best part of Christmas for you?
EVERYTHING!


So there's my Christmas tag! i tag every one to answer these questions, you can comment them on here if you want too! :D

As always, thank you for reading
Speak soon
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A Dream Come True

Friday 21 November 2014

Heya!

My dream has come true and i am going to DISNEYLAND in February, with college!! i am so excited! were leaving on wednesday 4th and we get Thursday all day in the disneyland park! and coming home friday! its only 1 day in the park but I've always wanted to go to disney and it will be amazing! :D I'm really happy i get to go with the friends I've made at college because we've all got so close and always have a laugh so it wouldn't be as good if i wasn't going with them! :) 



Just one downfall .. next week I'm going to Great Ormand Street for my Fundoplication, if you don't know what that is then here is a small explantation that i copied of the GOSH website :P… A Nissen's fundoplication is an operation used to treat gastro-oesophagael reflux. It uses the top of the stomach to strengthen the sphincter so it is less likely to allow food, drink of acid to travel back into the food pipe. I will be at GOSH for 5 nights and then will come home :)

One more thing, I normally organise a walk every year but last year we didnt do one BUT next year the Tarka walk is back! its in Barnstaple and the money will go to Live Life Give Life! if you would like to take part then please comment on my blog post or on Facebook(link below) we are hoping it will be bigger and better next year!

As always, thank you for reading,
speak soon
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Day Of The Living Day

Sunday 9 November 2014

Hiya :)

I hope you all had a great halloween! I did, I spent it with my friends in my house having a Chinese we didnt dress up or anything like that haha, but it was a good night, I especially bought some halloween sweets and made cupcakes because I am a great friend! :P (I love making cupcakes)


Last Saturday it was Day of the living day!!! me, mum and dad went to exeter to do the stall me, Kirstie Tancock and Liana Tolland organised, it was a busy day and it was a special day for all of us who's had transplants to remember our donors that saved our lives. we sold quite a lot and had dancers, they all had they're face painted as sugar skull, and so did me and Kirstie. Liana couldn't come unfortunately because she was in hospital. But it was a brilliant day and we raised £412 BUT!! we are still selling some things and we have raised an extra £100 so far! and we signed up 14 people to become an organ donor!

Of course i wouldn't do a blog about organ donation without trying to get people to sign up.. so please do it, I wouldn't be here now if it wasn't for my donor and their family, if you read my blog and if you know me, then you obviously know that i have changed so much for the better! so sign up just by clicking...here!

Here are some photos of the day...

Against the sign with dad :)
Kirstie Face Painting 
Me and mum with my sugar skull face paint.
Done by Kirstie
Me and Kirstie


As always, thank you for reading
Speak soon
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Meeting Faith :)

Wednesday 29 October 2014

Hello.

Yesterday(28/10/14) i met my closest CF friend Faith, we have been speaking for over a year on Facebook, texting, we never spoke to each other on the phone or went on Face time, but she is like my best friend, Faith is the same age as me and we went through GCSEs at the same time, so it was really good that she understood because she was doing them as well. i can speak to her about anything and i can always count on her when i need to talk to someone. anyway… yeah yesterday i met her for the first time and it was a really good day, Faith came to my house and gave me my birthday present which is nearly 2 months late :P she got me a Lush(bath stuff) birthday gift set! We went to Pizza Hut and then went into town and me and Faith decided to get our ears pierced, well she had her first holes done and i had my third. After a while, me and Faith was saying that our feet were aching so we came back to my house, ate some cupcakes and then my sister Louise decided to join us and meet Faith and Kerri(Faiths mum), they went home about 5:30pm. Then i went to bed to watch The Vampire Diaries and i felt really tired as it was a busy day. But overall it was an a wonderful day and it was lovely to meet Faith and Kerri, next time, me and mum are going up to theirs :) 



We had lasagna at Pizza Hut

My third holes done!



My Lush set :)


As always, thank you for reading
Speak soon
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A Bump In The Road

Sunday 19 October 2014

Hello.

Last Sunday(08.10.14) i was having severe pain in my groin, it got worse as an hour went on, then i couldn't handle it anymore so mum had to ring an ambulance, they paramedic team came and said because of my history i needed to go to the hospital, when we got there the doctor that was working at A&E said they have rung the surgical team to come and check on me which they did and said it wasn't my appendix so they decided to send me up to the children's ward Caroline Thorpe Ward, they did give me the choice to go onto an adult ward but of course i was going to choice the children's ward! i know i will have to go onto the adult ward when I'm 18 but thats 2 years yet! anyway… me and mum finally got to sleep about 4:00am and woke up at 8:00am!! we was shattered!! and then i had to go for an ultrasound scan to check things were okay, after that we waited all day and then we finally found out that i probably had a small cyst on my ovaries and it had popped, thats why i was in so much pain! 

We went home Monday tea time and then i was fine over night so i went back to college on Tuesday, but Tuesday night i wasn't feeling too well again, this time i was feeling sick, really cold, dizzy and my heart rate was high, i kept checking my temperature but that was fine and my sugars were fine! i just went to sleep early that night and felt a bit better in the morning but woke up really dizzy and i couldn't really lift my head off the pillow; since then I've been feeling a lot better and i'm going back to college tomorrow, i hate missing college because i really want to get on with my course! and of course i miss seeing my friends! ;) 



As always, thank you for reading
Speak soon
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New Life for Jessica

Sunday 12 October 2014

Hiya.

So, one of my CF best friends Jessica who was waiting for a Double Lung Transplant, had her call at 5am on thursday morning!!!! i was literally crying when she put it on Facebook and i didn't stop thinking about her all day, she went down to theatre at 2pm and went back onto ICU at 11:30pm, she is doing amazingly well for being only 3 days post transplant, she has already sat up in a chair and started to walk around her ICU room!! last night she put a Facebook status on saying 'Normal saturday night telly but not breathless :)' this made me so happy!! one day, once Jess is home and recovered a bit more, i will hopefully meet her! theres isn't one day that i don't speak to Jess and if there is, it feels so weird! but of course i gave her a break when she had her transplant but I'm happy I'm speaking to her again hehe! :P i really hope she has a quick recovery and her lung function goes up in no time! but she gets to live a normal life now, just like me! 

here is some photos of Jessica's progress so far.. 



Jessicas saturations now! she was on 4 litres before and her SATs were just staying at 92-95 with a bpm of 135-150 and resps of 35.

Jess standing up 48 hours after her Double Lung Transplant.

Thank you all for reading
Speak soon
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Transplant clinic

Wednesday 8 October 2014

Hey.

Yesterday night(07/10/14) me and mum travelled up to London we got the train at 6:17pm, Dad drove us to tiverton parkway so we only had one train ride and didn't have to switch any trains and our train went straight to paddington. We got to our accommodation at GOSH italian building and was hungry so we ordered food haha! 

This morning we went to GOSH and waited in the reception area for about an hour and then they moved me to an isolation room because of my CMV, i had my height, weight and bloods done, then went for lung function which is.. 75%!!!!! it's the highest it's ever been in my life! then i went to X-ray, came back to our isolation room and waited for Helen Spencer to come and see me. When she came in she just asked the normal questions: how am i? how have i been? and then i told her about the really bad cold i have at the minute but she's happy because it hasn't effected my lung function, she said she is really happy with my lungs and me! my neutrophils are good so i need to start back on MMF so i don't get rejection again! when my cold has gone and I'm better i can stop voriconazole and aciclovir because i don't need them anymore! 

Transition talk:
Today Helen mentioned about starting to talk about me going to adult transplant team and she said the best place for me to go is Harefield hospital and i will probably be ready to go for my 17th birthday! its pretty scary but I've been to a couple of hospitals before so another one won't hurt will it? i don't really want to leave GOSH because it's an amazing hospital and i know everyone, but i suppose i will get to know everyone at Harefield! 


i dont go back up to GOSH until 14th january now, which is so good!!

Mum and me on the train :)


Thanks for reading guys!
Speak soon
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Legoland Adventure

Saturday 4 October 2014

Hello my lovelies. 

Yesterday, i went out with my dad and then he asked me if i wanted to go out for the day today(04/10/14) then my Tracey(my step mum) said we should go to Legoland as we have an merlin annual pass, so my dad looked at some hotels online and then booked it!! we travelled up to windsor yesterday night and got there about 8:30pm, i was so excited when i woke up this morning!! even though the weather was bad we still had an amazing time! me and my step brother went on a ride where we had to pull ourselves up and then let go of the rope and we would fall back down again! and then we went on a water slide, i don't really go on rides as i get dizzy easily which take prochlorperazine for. We was very wet and very cold at about half 2 so we decided to leave and come home. But yeah. It was amazing. 

Before i show you the photos, I'm off to Great Ormand Street on Tuesday night for Transplant clinic on Wednesday, I'm hoping for all good results as i have been very well since my last appointment except for that little blip when i had to go into hospital :) I've been feeling the best I've ever felt!

Without my donor and their family i wouldn't be able to do things like this and enjoy it! They will be forever in my heart. <3

Here are the photos… 










- There was a lego giraffe with him bottom poking out haha!


-An ice cream and coffee shop at the beginning of Legoland :)

-They sell amazing doughnuts! 






-Lego Big Ben!

-Buckingham pallace!

-And of course a Lego Eiffel Tower, one day i will see real one and i will walk up/down it! 


Thank you all for reading
Speak soon
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