Hey Blogland,

Well I thought I had started to get better, and I did, but I went to work today and I had to be off of my oxygen for, I think it ended up being 6 hours, and I literally was in sooo much pain, my breathing is now laboured whether I’m doing nothing or not.

It’s a really unusual feeling for me because I have never felt as awful as I currently do and this is saying a lot. I’m not sure what it is because the cold I have is really minor literally it’s just a little sniffle and I don’t think that, that’s what is causing this. It’s a little worrying because my entire life I have been able to tell what it is that is wrong with me and I know how to deal with it and what to do and this is why I have never had any impromptu emergency A&E visits because usually I know my body and I know why something is happening. But at the moment I have no idea. I’m trying to persevere and hoping that it passes and it’s just a little blip but it’s just a bit disconcerting.

I’ve got a sinking feeling that its got something to do with my pills and medication because when I do my Iiloprost now it hurts my chest and I’m not sure how much longer I can carry on doing that one but I know the only option after it is the Flolan and just cannot bring myself to even contemplate that reality.   

My sleeping pattern is way off, last night I went to bed at 1am and got up at 4am and I’m taking like weirdly long naps in the day and I’m generally exhausted all of the time.

At the moment I’m having to seriously debate whether I can carry on working because today I just was in so much pain I don’t know whether its worth it anymore, it makes me anxious to go to work now knowing how I will feel at the end of it, I think that in itself adds to my chest pains but I do love my job and I’m sort of grasping to that sense of normality, because if I say I work it sort of, in my mind says, I’m okay, I might be waiting for a transplant but I’m still okay and as soon as I make that decision to say no I can’t work anymore its like admitting that I really am that ill that I can’t do it anymore.

A lot of my PH friends have said that it would probably be best to not work because I really do need to focus on staying well and fit enough to get my transplant when it happens but there’s just this small part of me, the childish part, that really desperately wants to be normal like everybody else even if it is for just 3 measly hours a week.

I’m going to ring Papworth, to let them know how I’m feeling on Monday just to let them know I’m not feeling quite right and then ring Hammersmith as well to let them know to. Lets see what they have to say.

I've just had a really good Saturday evening though in amongst all the feeling rubbish lol. I do love a good Saturday evening tv night. I love the lead up to christmas I get to watch, "I'm a celebrity get me ot of here", "The X Factor" all my lovely "crap tv" as my mum calls it :-)

I’ll keep you informed blogland
and have a great weekend    


  1. I hope you start to feel better soon Stacie :)

    Who is your favourite on The X Factor this year?

    1. Hey Tom,

      I'm sure I will do, if not I'm sure the doctors will make sure I do :-).

      My favourite is Jahmene, not least because he comes from where I live and went to the same college I did and is in the same year as me. I do think he's the best singer at the moment. I did want Ella to win originally but then she got voted out :(. If Jahmene doesn't win I don't mind if James Arthur wins :-)


  2. YOU ARE SO INSPIRING! Your determination is not something I can honestly say I would have in your situation! Your courage is contagious and I see you as nothing less than an amazing role model, i hope you feel better, i dont want you to think this is a shameless plus for my blog but my nutella hot chocolate always cheers me up! stay strong, youre beautiful and i wish you the best!


    1. Awww thank you very much Valerie, I have a few friends who are in similar situations that inspire me and keep me going, along with some amazing friends and family.

      I will definilty will check it out I love a bit of chocolate especially Nutella so I'll give it a go :-)

      Thank-you again Valerie xoxo

  3. Stacie, glad you are going to phone your centre, really hope things improve soon. Don't decide about work until you get yourself feeling better, really hope things pick up for you soon xxx

    1. Thanks Kath, I definitley will take my time deciding what to do, I'm not sure I'll listen to doctors with rgards to whether I should work or ot because because they've been saying for about a year they dont want me working but because I was feeling okay they were okay with it, so I suppose they'll see this as the perfect excuse for me not to work lol xoxo

  4. Hi,

    Sending you positive thoughts today from California.....hoping they lift you up a bit!!



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