Heya Blogland.
Well the past week/2 weeks has been a bit crazy hectic and I hadn’t really let myself have a chance to sort of sit down and assess how I was feeling. Now this might sound a bit strange but generally if I do something exciting then my mind overrides my body and I just let excitement reign!

Unfortunately the past few days I’ve had a chance to sort of sit down and get back to normal but now I'm feeling not bad per say just odd. I’m out of breath pretty much all of the time no matter whether I sitting down, talking, walking whatever and it feels like my lungs are too big for my ribs. Now its not the first time I’ve had this feeling, its actually pretty normal but usually if I’ve been walking or some form of exercise will induce this feeling. So I’m hoping it just needs a bit of rest and a lot of good old oxygen to go away. It’s pretty debilitating though because even standing up for a little bit of time can make it worse so I’m pretty much chained to my bed, or the sofa at the moment until hopefully it passes.

I have rung my doctors for those that are saying “well shouldn’t you go to the doctors?” Just an FYI if I did that for everything that happened to me I would be in the hospital all of the time, I know what my limits are and I know when something is serious, I’m lucky in the sense that growing up being terminally ill, I know when something is bad and when something is verging on bad but still okay enough that a doctor isn’t needed. I rang my doctors because it s strange to feel this uncomfortable all of the time without even minimal exertion. They are sending me out an appointment as soon as possible (so probably for early March time) so I can go in and we can discuss a treatment plan. At this point in time it’s not really about preventing my condition getting worse, although they will certainly try to do that if possible, it’s about keeping me stable and generally well enough for when my transplant comes and that also means trying to find ways of making me comfortable too. So we are going to try and find something that will hopefully stop the uncomfortable feeling in my chest because at the moment that’s the worst thing for me because it’s with me all the time. I can deal with getting out of breath walking and all that stuff because I can just stop doing whatever it is that makes that happen but when its there constantly, there’s nothing I can physically do to stop it. So we’ll see how that goes and hopefully we’ll come up with a solution.

I do however have an awful sinking feeling that the doctors are going to want to put me on the Flolan and I know I've been saying that for a while but I didn’t realise how high the pressures in my lungs were till I got the letter today from my PH consultants.

Now to put this in perspective for you guys a normal pulmonary pressure is between 9-18mmHg (don’t ask me what the mmHg is I have no clue lol)

You are considered to have high Pulmonary pressures at 25mmHg and that is a point where they may investigate if you have any issues going on.

Now my pulmonary pressures are 177mmHg which is A LOT.

That is what is going on inside my chest and that pressure is not only on my lungs but on my heart too and it’s having to work overtime with all this pressure that its under and this dramatic increase probably explains a lot as to why I’ve been feeling pretty rubbish for the past few months. And this is why I think they might put me on the Flolan. I mean we are all obviously going to have to weigh up the risks and see if it’s worth it, they are going to have to get a hell of a lot more statistics about the death statistic in congenital heart disease patients before I agree to do anything.

I think some of my doctors think I’m worried about the whole having a line in my neck and having to carry around a pump and all that stuff and while yes this is something anyone having to go through it would understandably think about, but it isn’t the thing I’m worried about the most. The very high risk of death is what I’m worried about and unless they can convince me otherwise I’m not sure I could do it.

I know this is going to sound stupid but in my mind if I’m going to die the thing I’ll die from is
#1 Transplant gone wrong
#2 Ultimate deterioration of PH 
#3 Getting transplant and the eventual rejection of my organs preferably in a good 30-40 years time. 
Seem reasonable? Not some stupid Blood clot from some stupid medication that I don’t even want to be on in the first place. I HAVE NOT been taking blood thinners for the past 11 years for that to be the thing that kills me. SERIOUSLY!   
Hopefully the doctors will figure it out; you know the problem with being an adult is you have to make all the big decisions about your life. My parents used to be the ones doing that and they did a pretty awesome job at it, I mean I’m still here right? And I can ask their advice and see what they think I should do but ultimately it’s me that makes the final decision now. I just hope I don’t screw it up.

Righty Ho guys I’m off to bed but if you haven’t yet go check out my giveaway it still has 2 and half days left to go on it and check out my attempt at a haul and let me know how you like them done or if think my attempt was okay.  
 See ya guys. ^-^


  1. Hi Stacie

    Can I just reassure you on a couple of points regarding the Flolan.

    Yes it is daunting but in the, almost, two years since I've had it I have had no blood clot problems at all. As long as you keep taking your Warfarin, this may increase a bit, you should be fine, Secondly going on Flolan gave me a whole new lease of life. I went from having to be carried or wheeled everywhere to being back in work within 6 weeks of starting it. My pressures went from 125 down to 70 within two weeks and are now around the 45 - 50 mark.

    It is a very difficult decision and I fought hard and long before agreeing and all I can say is I'm glad I did in the end because now I am not only still here but also fit for transplant.

    Hope that helps, and if you need to as me anything just PM me.


    1. HI Hazel!

      I think it'll happen eventually but I think there's this small part of me thats holding out hope that I won't have to make the decision and I'll get my transplant before I have to decide, the childish slightly niave side of me :). I managed to drag out the decision for 4 months maybe I can drag it out a little more.

      Also I'm just worried about having a stroke as well coz Rachel one of the consultants said there was a 50% chance of that happening in me and she thinks it would be higher in me because of the how damaged my heart is. If she had said 20% or even 30% chance I would have said yes pretty quickly but I don;t know why but 50% or more just seems like a bit of a coin toss.

      Maybe I'll get my call between now and my appointment then all this worrying will have been for no reason LOL.

      Thank you though Hazel it's good to know it actually works and if I don;t get my call I could potentially have a better quality of life :)


    2. I know it's a hard decision to make iv been on flolan 3 years and I know what a difference it has made to me it has its ups and downs. I hope you get call before you have to make that choice. I was lucky didn't have a say just got told that was what I was getting and then I started treatment that week I think when you have been given the choice you have too much time to weigh up the pros and cons and it's a lot more scary. Im sure things will work out x

  2. Stace, you have done so much in the past couple of weeks for everyone who is waiting for transplants. Now you need to concentrate on yourself. Hugs and kisses


  3. Stacie sweets you have spent the last two weeks working your guts out for those who are waiting for transplants. Now one thing your body is telling you is that it wants you to concentrate on it. Listen to it xxxx

  4. Hello Stacie!

    I just discovered your blog and I want to say how incredibly brave I think you are! You are right to keep fighting, life IS worth it! :D I really hope you never give up and you will get the transplant and heal!

    I also wanted to explain what mmHg is, I thought you might be interested :) mmHg is the symbol for "millimeters of mercury" (Hg being the chemistry symbol for mercury), it is a way to measure pressure. To give you an idea 1 atm (= the average pressure of the atmosphere on earth) = 760 mmHg = 101 325 Pa (pascals).

    Take care of yourself and keep fighting <3


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