Idiopathic Pulmonary Hypertension

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I started getting sick around the age of 12 but all my doctors put my passing out down to panic attacks, anxiety, depression, asthma.

I would pass out, lose consciousness, go blue, stop breathing and it still took the doctor 6 years, til I was 3 weeks off 19 to figure out what was really wrong with me. On the 3 of may 2010 I got rushed to Bendigo emergency department – I was blue, I couldn’t breathe and just from sitting to standing my heart rate went from 90 to 155bpm, they put me on full time high flow oxygen ran a few tests, told my mum I had a inoperable hole in my heart and I had less than six months to live, they were going to send me home to die.

Of course like any good parents would my mum and dad protested. It took the Bendigo hospital 3 weeks to get me a bed at the Austin hospital. Once I was at the Austin they did the exact same tests as the Bendigo hospital, told my mum Bendigo are idiots, I didn’t have a hole in my heart – I had Idiopathic Pulmonary Hypertension and I needed a heart and lung transplant, so they transferred me to the Alfred hospital. The Alfred put me on bosentan and viagra to start with, that didn’t help, so they tried an inhaler pump with ilapross in it (deadly nightshade) that made me worse, then I got put on a 24hr a day intravenous pump with Flolan in it. That kept me alive bearly for 18months then I got put on the transplant list and on the 9th of March 2013 I got my double lung transplant. I’ve spent most of the past 5 years in a hospital bed at the Alfred and I’ve still got a really long way to go.

Pulmonary hypertension is a very rare disease that attacks the lungs.  Idiopathic Pulmonary Hypertension is even rarer and affects about 1 in 1000 people. I was the 12th person in Australia to be put on Flolan.