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A Happier Post :)

Wednesday 27 May 2015

Hiya!

Hope you are all well? :) I'm still waiting for find out when I start the radiotherapy which is annoying but at the same time I am a little happy about it, I know that sounds weird but at the moment my lung function is stable and if it stays like it I would rather not have the radiotherapy for as long as I can because I want to enjoy next month, I have a busy month and I don't want to be so tired that I have to cancel it all, I know it's so important to have the radiotherapy and of course I will have it but I want to be able to have a good time whilst I am feeling ok :) 

Yesterday Faith and Kerri came to visit because we haven't seen each other since October last year! we went to pizza hut of course had a massive catch up, it was lovely to see them, we are going to see them again in August because we're going to a friends wedding, which is exciting!

Next month I have my English exams on the 2nd and 10th, I'm going to see one direction live on the 6th with Olivia, Mcbusted are supporting them which is so cool! not sure how its going to be without Zayn in the band though but I will still love them! I'm going to Butlins in Minehead with my family and I am also going to Oceanfest with friends which is a festival near where I live in Croyde. I'm so looking forward to being able to enjoy myself again, I haven't really been doing much lately, revising for my exam and I started watching The Vampire Diaries again! it is a must see! it's so good, so if you haven't seen it yet then you need to watch it! well thats if you're into the whole vampire thing haha.

At the moment things are going okay, I'm not too nervous about the radiotherapy yet, I think it's because I haven't got a date for it. I do know that I'm not looking forward to feeling rubbish whilst I have it but if it helps then I will fight the tiredness!

Me and Faith <3

As always, thank you for reading
Speak soon
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Plasma Exchange Results

Thursday 14 May 2015

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

Cystic Fibrosis Awareness Month

Tuesday 5 May 2015

Hiya!

May is Cystic Fibrosis Awareness month… I did a post about it last year but i'm going to do a post about it every year! 

As you know(if you read my blog) I have Cystic Fibrosis, it is a genetic disease which effects mainly the Lungs and the Digestive System. The lungs will fill up with thick and sticky mucus and it is difficult to bring it up so it makes it hard for us to breathe, we also get infections in our lungs so we need IV antibiotics to help with the infections. We have to take medications, nebulisers and inhalers and also do physio twice a day, take creon every time we eat so it will digest our food for us, it's hard to gain weight so some people may need a feeding tube to help them. Eventually you end up having CF Related Diabetes. There is so much we have to take on in our lives to just stay alive, unfortunately there is no cure for CF.. YET! I really hope one day there will be, we need to make as much awareness as possible for this horrible illness!!! 

When I was born the doctors told my parents that the life expectancy was around 13 years old, in my case this was true because i needed a lung transplant when I was 13! and if I didn't get the transplant then i wouldn't be here now. I've lost a few close friends to CF and it brakes my heart every time I do, even if i do not know the person I get upset because every CFer means so much to me. There's 1 good side to CF which is that I have met some amazing friends in my journey with it! it's so good to know people with the same illness because they know what you are going through so you can talk to them!  

Each week 5 babies are born with CF and 2 people die from it and there are more than 9,000 people living with CF in the UK. If you would like to donate to the CF trust or do some fundraising to help raise money for a cure then please click on this link…*Cystic Fibrosis Trust* 







As always, thank you for reading,
Speak soon
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