Wednesday, 29 May 2013


Well, I've decided to start a blog. To be honest, I'm not sure why, other than, as a writer, I thought I ought to. I'm currently studying Creative Writing with Film Studies at university. "I enjoy writing" I thought to myself, "so why not start a blog?" So this is me, starting a blog.

As you may have gathered by the title of this blog, I have heart disease. And as a child I was, "the girl with heart disease." A generalisation that I will probably never escape. It's not only heart disease I suffer from, but a rare heart/lung disease, (it obviously couldn't decide which organ it wanted to destroy so went for both) which is called Pulmonary Hypertension. This is quite a difficult one to get your head around (unfortunately so are all my conditions). It is, in simple terms, the narrowing and tightening of the arteries in the lungs which makes it hard for blood to get through to be oxygenated, this creates pressure in the heart which has to work harder. My heart is rather strange. It has two left sides, two holes and a missing heart valve. I also have a condition where all of my organs, apart from my lungs, only have left sides and are located in odd places. I will be referring to the lung disease pulmonary hypertension as PH and my heart disease as CHD (congenital heart disease) from now on.

I have been assessed and possibly offered a double lung and heart transplant (assuming my tissue typing, which tells us what percentage of the population I am a match for, comes back okay). But I'm hoping this will be a long way off.

I'm currently doing well on a new medication called iloprost (I will do a full drug routine post soon) which has helped me be able to walk a little though I use a wheelchair a lot of the time. I'm currently struggling with severe chest pain and I'm off to the hospital on Friday to check there's nothing wrong other than the PH straining my lungs.

So this blog is going to be my thought on all the medical stuff so if you're interested stick around.

Have a lovely day!

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