September is ITP Awareness Month, so I thought I’d share my ITP story with you. First, some key bits of information so that you know why it’s such a big deal:
- ITP stands for idiopathic thrombocytopenic purpura which is, essentially, a very low platelet count. A normal count is 150,000-400,000 (generally said as 150-400).
- The lower the number, the higher your risk of bruising and prolonged bleeding/healing – or at the extreme, spontaneous internal bleeding and haemorrhaging (“brain bleeds” and such).
- It is classified as a rare autoimmune disease.
This story is about my personal journey. If you want more information on ITP, check out the following links:
Right. Now let’s get this story going!
My story began in late 1995 when I was just 21 years old. My energy levels were sapped and I could barely drag myself out of bed most days. My arms and legs were covered with bruises; my gums bled when I brushed my teeth; cuts took ages to stop bleeding and even longer to heal. It took a while for me to fully realise that something was wrong, at which time I went to the local clinic to be checked out. By this time it was January 1996.
It was only an hour later when I was called back into the clinic for more blood work because my platelet count was in the single digits and they thought it might be wrong. A subsequent draw gave similar results. Then there was a bit of panic with the nurses and doctors who were making loads of phone calls before prescribing me some prednisone and asking me to come back the following day.
In the days to follow, I had my blood drawn almost every day. I also began to experience the evil side effects of steroids. But despite the medication, my platelet counts never rose above 30. I was frightened, to say the least.
Soon, my rural family doctor made an appointment for me with a haematologist in Seattle. I didn’t have anyone to take with me, so I made my way on my own and found that the haematologist’s office was in the Oncology Unit. You know, like cancer! As I sat there in the waiting room, watching cancer patients come and go, I began to cry. I was even more frightened by this time and there was no one there to hold my hand.
Meeting with the haematologist was strange. She talked to me about the possible causes including leukaemia. She also talked to me about the various tests she needed to run – some of which required bone marrow aspirations. As I left the hospital, I was shaking. I was still no closer to knowing what was wrong with me, but I was increasingly frightened that it was the worst-case scenario. (The side effects from the evil prednisone didn’t help.)
Eventually, it was decided that I had ITP and that they would do a splenectomy to “cure” me – a decision I felt I was bullied into at the time and one that I regret to this day. My surgery was in April 1996 and by June of that year, my counts had stabilised to a “normal” count of around 160, though they would drop to the 80s when I had a cold or other illness.
Unfortunately, by February 2002 my body decided that stable wasn’t good enough and my counts took a drastic nosedive – with a count of six (yes, 6) on my birthday. Once again, I found myself back on the prednisone. And, once again, I found myself frightened. But because the prednisone wasn’t working this time, they put me on azathioprine as well.
It took several months for my body to regulate itself again, only this time it stabilised at an average count of 70-80. Which meant that getting sick means drops of 40 or below.
Today, my average counts are still around 80, but I have had a couple of 150-180 counts, too. (Which makes me happy.) But, sadly, I still get low counts (my last low was 13 back in March).
What does this mean for my life? Well, it means that I have to listen to my body. It means that I have to be careful and pay attention to any new bruise. It means I have to keep an eye out for signs of a low count (fatigue, petechiae, nose/gum bleeds). It means that when I get a cold, I get a double-whammy of a low count. It means I have to be careful around things that can lower my counts (chemicals, certain foods). And, frustratingly, it means that I have to argue with people who think that I need to be treated like an invalid.
But I can still live my life. I can still run and play and do things. Yes, I have to be careful and I have to use common sense, but that doesn’t mean I don’t get to enjoy life.
So, that’s my story. It’s not interesting or anything, but at least I’m alive to tell it!
[That’s a picture of my platelets that I drew when I had a count of 10 in January 2011.]