Tuesday, 1 January 2013
Knowledge is Power
I've never enjoyed being in a hospital. They smell funny, everyone's always in a rush, and the cafeteria food never really looks much better than something scraped off the kitchen floor. So you can imagine how I feel about having to spend an entire day in one every three months . . .
My eldest child, Julian, turned twelve last November, and graduated Primary School in December last year. These were two huge milestones for my husband, Nigel, and I. Actually, it was a fairly big deal for his younger siblings, grandparents, aunts, uncles, cousins and pretty much everyone who knows him.
You see, on Saturday 6th March 2004, Julian was diagnosed with a rare and life-threatening heart/lung condition called Idiopathic Pulmonary Arterial Hypertension - or as it was referred to then, Primary Pulmonary Hypertension (PPH) - and we were told that this condition has a mortality rate of 2 - 5 years. In fact, we were told that it wasn't likely that he would survive this condition to start Preschool (he was just under 3 1/2 years old at the time).
Despite Julian being diagnosed over 8 ½ years ago, I’m still not as well versed in his condition that I would like to be (a layman can only understand so much before the brain says ‘enough’!), but I’ll do my best to explain it for you:
Idiopathic Pulmonary Arterial Hypertension is a rare condition, involving heart and lungs. A person with IPAH has high blood pressure in the blood vessels of the lungs, and the walls of these blood vessels are ‘constricted’, making it more difficult for blood to flow through them. As a result, the right side of the heart has to work so much harder to push blood to the lungs, and overtime, becomes enlarged. The additional strain the heart is put under because of this can eventually lead to heart failure. Unfortunately, the causes for Idiopathic Pulmonary Arterial Hypertension are unknown, and it actually affects more women than men, and is even rarer in children.
Julian is one of 4 children in Queensland with IPAH – 3 boys and 1 girl – and as far as we are aware, was diagnosed the youngest and has been diagnosed the longest of them all. The kids range between 12 and, I think, 15. They all get along great, and encourage each other when they spend the day at their clinic once every 3 months, and there’s even a bit of friendly competition with the boys to beat the girl, who is currently beating the pants off them!
I'm new to blogging, but I decided to create 'Saving Jules' in the hopes that other parents will chance upon my blog and discover others on the same journey they are, and realise that a diagnosis is not a sentence. Yes, we face every day with the knowledge that this may be Julian's last, but what a journey we are on with him! We have met wonderful people with a huge capacity for compassion, discovered new depths to love, shed tears, hurled abuse at God and Life, and believe it or not, shared a lot of laughs.
Come, share our Journey.