One Direction, McBusted & My Friend Emily xx

Hello Everyone!

I hope you've all had a lovely weekend! On Saturday I went to Cardiff to see One Direction On The Road Again tour and McBusted were their open act whilst they were at Cardiff. Dad drove me and Olivia up there, we was worried as the day before there were 45 mile tailbacks but thankfully it wasn't too bad but the seeing 1D and Mcbusted live one word.. BRILLIANT! It was so good! this is the third time I've seen 1D now and it was by far the best time! It was even better that I had Olivia with me because I could scream as loud as I wanted as I knew she would as well haha! 

I can now tick off that I have seen McBusted live on my Bucket list! I've wanted to see them since they became one band but every time they've had a tour I've been to unwell to go! so I was very excited to find out that they were One Direction's opening act in Cardiff! they sang Year 3000 at the end and literally everyone was singing along to it and it was such a great atmosphere!

Tomorrow I start Radiotherapy and I'm starting to get really nervous but you have to think positive in these situations! the trial run went okay last Friday so I'm sure it will be just as okay as that was.

I've heard some devastating news about my friend Emily who I've spoke about before, she has took the brave decision to stop her treatment, she cannot keep being in pain and suffering! please can you keep Emily and her family in your thoughts at this very difficult time! I first met Emily at her 1 year transplant party, she was so happy and smiley, made everyone laugh with her humour, she is so loved my lots! She came and walked The Tarka Walk 2015 even though she had rejection, that was the last time I saw her. I will always remember her big smile, she was smiling even though she was going through so much. Emily said to me that we will fight this battle together but knowing that Emily will no longer be in pain and suffering has made me cope with it a little easier but it will be so hard to see her go. I hope we meet again one day Emily, I will keep our memories close to my heart forever, I love you.

Here are some photos of Saturday… 

As always, thank you for reading

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Plasma Exchange Results

Hey Guys,

I had the Plasma Exchange(washing my blood) on the 27th April for 5 days, I had the line in my neck and when it came out, it was one of the worst things I've experienced and I hope I never need to have one again. The machine was smaller then I thought it would be and I didn't feel anything whilst it was happening which is good :) my sisters came up to stay for 2 nights so it wasn't so boring haha! Also my friend Ella, who has had a heart transplant came to see me on the Thursday, she gave me some lovely gifts! I went home on the Friday and I'm trying to do something everyday even if it's just going for a walk, i don't want myself to get worse or my lung function to go down because I'm not doing anything. 

I had transplant clinic yesterday and I got the results from the Plasma Exchange… my antibodies have gone from 19,000(before the plasma exchange) to 7,000 so it has helped but my body is still producing antibodies so I will need to have the radiotherapy to help kill them so they will not come back, we hope this will work! I also saw both my CT's the one just after Christmas and the one a few weeks ago and I saw the scarring I have. It isn't the best news that I need radiotherapy but I'm really hoping this will work and finally keep the antibodies away! My lung function is still the same and Helen said it won't go up anymore so hopefully I can keep it stable. 

I would like to say a big thank you to the people who have messaged me! it really does mean so much to me that I have a lot of support :)

Also please can everyone say a prayer for my beautiful friend Emily who I've mentioned before in my blog posts, she had a double lung transplant in 2013 too and now has chronic rejection, she is fighting for her life. I know she will get through this! she is one strong lady! <3 

some pictures of the machine…

The long rectangle bag at the back is my old plasma,
the two smallish ones on the right is the new plasma
i had 6 bags of these.

one tube for blood going out
and one tube for blood going in.

The blood going through the machine.

As always, thank you for reading

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The Tarka Walk 2015!

Hello!

Saturday was the day for the Tarka Walk 2015 which was a sponsored walk me and my family organised and the money raised will go to Live Life Give Life, it was a great day and around 100 people turned up to do the walk, there was a raffle which had some great prizes, we've already raised about £1000 so far and we haven't had everyone's sponsorship money in yet! A few friends that has had transplants came down for the walk too, one of my best friends Jess Paddock who i have mentioned before, Emily Icke and Neil Capener, they have all had double lung transplants like me. I only managed to do half of the walk but that was more then i expected to do. Jess did the whole way and she is only 5 months post tx, i'm so proud of her! i wouldn't of been able to organise it without my Mum, Dad, Step mum and Austin Wallas who has helped my family a lot with the sponsored walks we have done! in the night me, Jess, Emily, Neil and friends went out for chinese before we all said goodbyes, Me and jess went to see Harriet on Friday and i bought her a lovely friend stone to put on her grave, it looked beautiful, Harriets parents and little sister came to the walk and it was hard to hold back the tears but i loved seeing them.

Thank you everyone who came to the walk and theres still chance to sponsor me through my Just Giving page please click..  *HERE*. We are thinking of doing a summer fete next year so i look forward to seeing you all there! for now i shall leave you to some photos of the day…

Emily, Neil, Me and Jess

Dad Holding the Organ Donation sign

The Lovely Jane Hoare and her friend Heather holding the sign

At the start line. 

Me and my gorgeous mum holding the sign. 

My Childhood best friend and her family, basically my second family.

Harriters parents Greg and Helen and her little sister Imogen 

One of my gorgeous nephews 

My other childhood best friend and Kim a friend of ours.

Emily, her friend and Neil behind her.

As always, thank you for reading

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Goodbye 2014

Hello!!

2014 was the year i started to live a normal life again, despite going into hospital a few times because of lung problems, it was still a great year. 

• I did my GCSE exams which wasn't easy because i missed nearly 2 years of school
• I left school
• I went to my school prom which i never thought would happen
• I went to see ONE DIRECTION!
• I went to Butlins with my family
• I was 1 year post Double Lung Transplant thanks to my organ donor
• I had my 16th birthday and party- 2 years ago i didn't think i would be here for my 16th birthday
• I went to Hungary with my dad for a week! 
• I met some great friends thats I've always spoke to online (Faith, Jess, Emily & David, Charlotte, Victoria and Vanessa)
• I've made amazing friends from college that i can call my best friends 

These things might not be a great big deal for some people but for me it is amazing! i say this a lot but i only did all those things because an organ donor saved my life! their parents/carers said YES to organ donation. loosing someone you love is the hardest thing that could happen but knowing that they saved someone else's life is a great thing! i will always be happy with my life no matter what happens and will never ever forget my donor. 

sign up and do the right thing, organ donation saves lives: CLICK HERE!

Update: the methylpred seems to have worked its magic and now i am on 60mg of prednisolone for a week and gradually bringing it down(i'm still eating loads!) my lung function has gone up to 64% which means i am going home tomorrow! after 4 weeks of being in hospital i am actually allowed home! i will be coming back up to GOSH on the 28th January for a quick check up before i go to DISNEY!!!! and i have my fundoplication on the 19th February! i am sooooo happy!! :)

As always, thank you for reading

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Emily Icke's 1 Year Transplant Anniversary Party

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

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