20.3.13

The Flolan Diaries


Hey Blogland, 

Well I’m going to call todays blog “The Flolan Diaries”. This is because over the next month or so, if I don’t get my transplant that is, I will be writing a lot about Flolan and therefore if I’m going to write a lot about it then the title should probably be a good warning for you guys about what I’ll clearly be writing about. 

So today I made my way to Hammersmith with my mother, fairly uneventfully as they go, and today was “the talk” about Flolan. They basically went through the basics of the machine and showed me how to work it initially the easy way lol. They also wanted to know whether I had made up my mind about it or whether they were going to have do some convincing. I told them I wanted to do it because at the moment there’s no getting me off of my oxygen which pretty much sucks, I even had to ask to go on the hospital oxygen today because I felt awful which I never do because all you do is sit and wait while you’re in the hospital but hey ho thats here nor there. 

But basically guys I will be going on the Flolan as soon as they can fit me in which should be within the next few weeks which is all very exciting! Although there is still the small naive part of myself that still hopes that maybe I’ll get my transplant before I have to have it put in me and then all this worrying and decision making will have been for no reason whatsoever lol. In all seriousness I really hope it makes a difference though even if I don’t get my transplant before it happens all I really want is to be able to get off of my oxygen for a little bit or instead of all day just a few hours of something because thats starting to annoy me a little. 

But as of today, right now! I have been on the list 11 months which is slightly insane can’t believe it’s nearly been a year already that flew by!

I’ll have a few more posts up soon guys I’ve just been super stressed and nothing all that interesting has been happening for me to write about but just wanted to give you an update after today. 

OOOOoooo and a P.S. Massive welcome to all my new followers I hope I don’t bore you too much and maybe you’ll be a little enlightened as to life on the transplant list :)

Write soon blogland    


15 comments:

  1. I'm a new follower and i just want to say hope things go okay :) i found your blog and i love it!
    Makes me see that people have it so worse than me.

    P.xx

    http://greywalls94.blogspot.co.uk/

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    1. Aww thank-you :D I'll make sure to check out your blog :) xoxo

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  2. I hope that you get your transplant soon! :) And I have a question...what is flolan suppose to do?

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    1. Hi Elise, flolan is a intravenous drug (fed 24/7 through a tube in th neck) and it's basically a synthetic version of a enzyme we have in our bodies it helps blood vessels in the lungs and heart dial ate better and helps the right side of the heart pump better as well :) basically it tries to help your body do things it normally would do by itself so that would hopefully bring the pressures down in my lungs :) lets hope it works :D xoxo

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  3. I am also hoping you get you're transplant before that! 11 months is a really long time, I can't imagine waiting that long, you are so strong. You're call will come soon! Take care! xo

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  4. I really hope you get your transplant soon. You are such a great writer :)

    Good Luck.

    Aj.

    http://sparklypineapple.blogspot.ie/

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    1. Aww thank you AJ I hope so too. Your far to kind I don't think I'm a very good writer at all, I tend to write as I speak (So as I would say it) so sometimes it can seem a bit of a jumble. But I like it like that sometimes because when I read back then I can see how I was thinking at the time, and if it's a mess then so was my head lol

      Stacie xoxo

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  5. Hi.I would just like to say you`r a very inspirational person and what you have been through is very sad but do not lose hope.I pray to god that one day soon you will get your transplant and hopefully get better. Get well soon darling!
    Peace&Love

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    1. Hi Aisha, Thank you very much, that's very lovely of you to say! I will never lose hope I promise, I may sometimes have a off day but I always come back.

      Thanks Aisha
      Stacie xoxo

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  6. Hi there^^,
    Your blog is sooo cute, really like it. Your desigh is great!!!
    XOXO Abby
    http://one-dollar-milkshake.blogspot.com/

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  7. Your blog is absolutely stunning as are you as a person. I can't believe i've only just found it and i'm definately following now. Keep up the good work and i really hope you get your transplant soon

    lots of love

    jesslorenx.blogspot.com

    x

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  8. Your blog is so cute! You seem like such a lovely person.
    Following!
    -Charlotte
    http://www.incharlottesshoes.blogspot.co.uk/

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  9. Your blog is lovely! :)
    Glad I found it x

    Just thought I'd let you know I'm having a MAC lipstick giveaway which ends tomorrow. You can enter the giveaway by clicking here It would mean alot if you could enter! Good Luck :) xxx

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  10. Hello Stacie!

    Your blog is absolutely beautiful, as are you as a person. It's so lovely to read all inspirational posts. Thank you for sharing it with people.

    Love one of your new followers,
    Jayde-Paris

    www.parisbeautyboutique.blogspot.com

    x

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Thank-you for commenting <3