20.4.13

1 YEAR WAITING...

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What happens in a year when you are on the list?

Well for me it is this... 

- I started a blog
- I got put on a drug called Iloprost
- I got to meet more wonderful Vampire Diaries cast members.
- Went to Harry Potter Studios (Awesome)
- I turned 22 years old
- My new nephew was born
- My twin sister got engaged
- I got to be on t.v. and in the newspaper
- I got taken off of the drug Iloprost
- Have been in and out of hospital for regular clinic appointments
- I had surgery and was put on an intravenous drug called Flolan.

365 days have past...

...I have had no false alarms...

...but in that time 1,095 people will have died waiting... 

...thats 3 people a day... 

...something that does not need to happen...

...I am most fortunate that I was not one of them...  

...but the likelihood is I probably could be one of them this year.


 I think there are some who believe being on the list somehow changes your life in some profound way. It doesn't. Life goes on. We might go to hospital a bit more, and slow down a bit more, and maybe start to do less but the people around us still do the things they did before, they still live their lives, I just happen to look at my phone a lot more and it's just a year later which I'm very lucky to have had and everyday that passes is another step closer to transplant and another day of precious life.

The quote above is something that somedays I think I live by but feel like I should live by it alot more often especially considering how I love the rain so much ;)

27 comments:

  1. So well put Stacie. Love Maria XXX

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    1. Thank you Maria, I'm not very eloquent with words so sometimes what I mean to say and the way it reads don't normally come across but I'm pleased with it :)

      Stacie xoxo

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  2. I hope you are not one of the 1,095 best of luck <3

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    1. Thank-you Hannah, Me too and I don't intend to be either :D

      stacie xoxo

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  3. Wish you all the very best for this next 12 months I really hope that you will be able to write I started a new life with a transplant and I am loving every day :-)

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    1. Thanks Mark, hopefully the Flolan will give me a chance to live each and everyday up until my transplant and then after I will be able to do everything I ever wanted :)

      Stacie xoxo

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  4. I used to have that quote as my phone background!love it & your positive attitude xx

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    1. Thank-you Hannah, I was surfing pinterest and cam across it and loved it :). And thank-you again it's not there 100% of the time but definitely there most of the time and I always thing if you think positively thinks tend to turn out better :)

      Stacie xoxo

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  5. Stacie this is such a happy and sad post at the same time, I hope you get your new heart soon x

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    1. Thank-you Hayley I would say it's 80% happy 20 % not happy LOL good proportion I think :).

      Stacie xoxo

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  6. I have everything crossed for you honey xx

    http://beautyqueenuk.blogspot.co.uk/

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    1. Aww thank-you I'm sure if I'm a patient girl it will happen in no time :)

      Stacie xoxo

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  7. But you could also be a person that tomorrow gets a transplant! Never ever give up hope and always fight your hardest. You're beautiful and so inspirational. It's got to the point now where i've decided when i pass whether that be tomorrow or in 80 years if my organs can help someone i want them to have them X

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    1. That would be awesome if that were to happen, I'm not sure if I would be scared of excited though, I'm sure I'll only know when it happens lol. That is AMAZING as well! I wish a lot more people were like you, but I suppose it's not something that can be forced it has to be their decision and I'm soooo pleased that you've decided to. Obviously hoping you won't be donating them in the near future we're aiming more for the 80years down the line mark :D xoxo

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  8. Hey you!
    It's good to see that you're out of hospital! And look at your battle wounds Mrs, they are some serious bruises but 'you should see the other guy' right? haha. You have done so much in a year! And your message is getting out there.
    Speak soon
    Laura xxxx


    http://www.lisforladybird.com

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    1. Hey Laura, I know tell me about it but they actually feel loads better than they look, they felt bad when there were no bruises LOL. They're yellowing though which tells me they are going away soon (hopefully lol) . Thanks Laura!

      Stacie xoxo

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  9. Considering everything you are going through, your attitude is very positive and encouraging. Such an inspiration to me{:

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  10. Wow, I've just come across your blog and think your such an inspiration for writing something to raise awareness :) you should be so proud of yourself. I've put your button on my blog in the hope that it will help raise awareness of PH - I hope that's okay? :) would love to hear from you and keep up the positive attitude :) an inspiration to us all xxx

    www.allthingsbeautiful-x.blogspot.com

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    1. Thank-you Jessie-Ann Thats really lovely of you to say and I certainly don't mind at all the more people who hear about it the better :). I always will do, I sometimes have my down days but I never fail to to come back to my normal positive self :)

      Thanks Jessie-Ann
      Stacie xoxo

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  11. I love that quote so much! I'm really happy you're out of hospital, and I can't wait for the day that you get your transplant (you WILL!) I talked to you a while ago about becoming a donor, and I just thought I'd let you know that I have signed up, and received my card yesterday! It sounds really corny but I thought I'd let you know that you really are making a difference - before I started reading your blog it hadn't ever crossed my mind to even start considering looking into organ donation, so it literally is completely down to you! Once I found out the facts and figures it was a bit of a no-brainer, so thank you for bringing organ donation to my attention! I've actually written a little blog post on this and I linked your blog into it (I hope this is ok!) so if you'd like to have a look it's here: (http://miss-tilda.blogspot.co.uk/2013/04/nhs-organ-donors.html) :)

    Wishing you many more happy years to come:-) xox

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    1. I remember Mattie! I'm soooo unbelievably happy that you did, obviously we're still aiming for you to be alive for a good 80 more years but it's wonderful that if the worst were to happen that you'd be willing to give the greatest gift you can. I will definitely check out your blogpost and hopefully I should be able to reach a lot more people your age as *fingers crossed* I will be featuring in popular magazine for people between 15-30 (more info to come) I'm a little excited LOL xoxo

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  12. wish you the best i love all your blog posts so much, there amazing and so well written
    thank you

    holly
    http://teenagebeautyobsession.blogspot.co.uk/

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    1. Awww thank-you Holly thats very kind of you, I write as I speak so sometimes it comes out a bit jumbled but I'm pleased you think so :)

      Stacie xoxo

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Thank-you for commenting <3