Once upon a time......

Just kidding, well after much contemplation, I am going to document, my life as I struggle with a rare lung disease, that nobody knows much about and hopefully a double lung transplant and life beyond.

Probably the best place to start would be December 2013, when I was finally diagnosed with Pulmonary Capillary Haemangiomatosis (PCH it's easier), after 8 years of symptoms. PCH is a extremely rare disease, that generally does not get diagnosed until Post Mortem, so really even though no one really knows what to do with me, I am pretty lucky, that I stumble upon some smart cookies at St Vincent's, who worked it out.

PCH is fatal, and suffers generally decline quickly once the disease takes hold. There isn't a cure or treatment, my only option is to try and get a double lung transplant before it's too late.

So this is where I am at, undergoing a speedy assessment to see if I am elligible for a transplant, which will hopefully give me some of my life back.