Most of my friends post-2009 might not know this about me, but when I was 9 years old I was diagnosed with an autoimmune blood disorder. Recently my haematologist asked me to contribute my own story to a support forum for patients, and I thought I’d share it here as well. Vive les sciences!
I’ve lived exactly half of my life with ITP – but if ITP were a person, these days it would be a familiar, though not exactly friendly acquaintance to me, rather than the strange, alien sounding blood condition it seemed when we first met (at the age of 9 I could hardly spell the word ‘idiopathic’).
ITP, or its full designation idiopathic thrombocytopenia purpura gives an idea of what the blood disorder means to those who have it – thrombocytopenia means a deficiency of platelets in the blood. This causes bleeding into the tissues, bruising, and slow blood clotting after injury. Purpura indicates a rash of purple spots on the skin caused by internal bleeding from small blood vessels. Idiopathic simply means unknown cause, which leaves doctors and patients chewing over murky avenues of treatment such as platelet transfusion, steroids, bone marrow examinations and the like. With a few lucky exceptions, most courses of treatment yield short-term results at best and are utterly redundant at worst.
Whilst a healthy platelet count is in the range of 150,000 to 450,000 per microlitre of blood (150-450 shorthand), at the time of diagnosis mine was low by all counts at around 20,000 (20). Although the figure would fluctuate over the years – from a worrying low of 6,000 (6) to 40,000 (40), on a normal day it sits dependably in the 20,000-30,000 (20-30) range.
These days ITP isn’t a big part of my life at all, I don’t think about it once a week or even once a month. By all accounts, it’s an invisible friend. I’m only reminded of it when I trip and fall on my butt or take a tumble down the stairs, and the costs of my clumsiness stay for longer than they should.
But it wasn’t always like this. In the beginning, my parents and I worried endlessly about bruises, wounds, and tooth extractions. My specialist at the time at the Children’s talked about splenectomies, blood transfusions and steroids. This all made her, the hospital and the blood disorder a whole lot scarier. I stopped playing sport and stayed home from school on heavy days when I had my period. I learned to identify and avoid risky situations.
But I think the biggest price I had to pay for having less platelets than everybody else was not being able to fly. My specialist had explicitly warned us against taking me overseas: with a low platelet count of 10-20, the high air pressure of flying by plane could cause rupture to blood vessels in the brain, and in a worst case scenario this could be fatal. And so it was that I spent most of my early teens dreaming about flying when I sat in the classroom or before falling asleep at night. Even if I hadn’t wanted to travel the world to begin with, the reality that I could not made me want it a million times more. We could only go interstate – when my whole Year 6 grade went to Canberra on camp, my parents drove me there and back separately from the cohort. The trip took sixteen hours in total, eight times longer than that of my classmates. Isn’t flight great?
I’d think about Hong Kong, Paris, New York, London compulsively with not just a hint of adolescent romance – everything I read and heard convinced me that any place was better than Melbourne, my forced home (I now know better). I was addicted to stories told by travellers and expatriates. I learnt French, Japanese, Arabic and my parents’ native Chinese, anything that could give me a glimpse into life outside of the places I knew. In hindsight I think that maybe this whole period gave me the first inklings of what my future career aspirations would be – I later finally identified this as journalism.
I would wonder: if nothing changed and I didn’t get any better, would I have to be confined to a career in Australia without international prospects? Would I never get to go anywhere in the world? It got to the point where not a day went by without me thinking about flying. I prayed for miracle leaps in my blood count, and wore ‘lucky jewellery’ to monthly blood tests. I’ll tell you another little (embarrassing) secret: after watching the pop psychology movie The Secret that preaches the law of attraction, I tried hard to imagine the sensation of flying; of looking down from the window of a plane onto a city of night lights, following the rules of desire, ask, believe, receive. But who knows – in the end I did get what I wanted, though not exactly in the way I’d thought!
In 2009, I was passed onto another specialist at the Children’s. By this time, I’d spent six years in and out of the haematology ward, and not much had changed – at the last appointment with my old specialist she urged my parents to seriously consider surgical removal of my spleen, a risky and non-guaranteed cure for ITP. When I met Chris, it was a whole different story. By then medical research had progressed significantly, and some doctors took a far more liberal approach to treating ITP than the conservative approach we had been used to. Chris was definitely of the more recent camp. He had a Let’s-wait approach.
Let’s wait and see how your body develops and whether the platelets might improve with it (he thought they would).
Let’s wait and see what happens before we take your spleen out, or pump you with steroids (and we did).
Chris told me to play sport again, and most importantly – he told me to hop on a plane without a moment’s hesitation. To this end, I always thought this verdict was a little anticlimactic after all those years of waiting, but I was so happy I DIDN’T CARE. His optimism was fresh and overwhelming – and set me free.
I remember calling my dad’s sister in Hong Kong to tell her I was coming and crying from happiness. At the time of booking my Christmas trip, I hadn’t been anywhere for seven years. Since then, I’ve studied abroad in Japan, have a trip to Europe lined up for next year and might even be going to India in January, fingers crossed. Between my specialist, my parents and I, we’ve removed most of the obstacles stopping me from living like a regular teenager. Anxiety is probably the biggest one: I don’t panic nearly as much when I fall over – ‘let’s wait and see’ – and three more people have been sleeping easier at night for the last three years.
For more stories like mine, check out this page.