I became active in the two Facebook ITP groups which are a wonderful support for people trying to make sense of - and live with - ITP. There people were discussing the different therapies and their experiences with them.
One lady shared a story about one of her family members who had a count of zero and didn't respond to any treatments. She eventually died. Stories like this are scary to hear about, but eye opening too.
The problem with ITP is that each person afflicted by it will present the disease in a slightly different way. Some will suffer from a lot of bleeding, bruising and intense fatigue where others will have the petechiae and fatigue, or no symptoms at all.
In the same way each person responds to the treatments in a different way. One person may have great success with a treatment, yet it may do nothing at all for someone else. One person may experience no side effects to a drug that others react very strongly too. So in many cases our Drs simply have to try different things and hope they'll find a perfect match between patient and treatment, and hope the results will last. This can be challenging and disheartening for patients and their hematologists.
The frustration I have is that in New Zealand (as in Canada) we don't have full access to all the therapies that are available to UK and American patients of ITP. For instance the two options I was presented with were surgery or Azathioprine - and I was cautioned against the drug.
If I was in the UK or America they would likely give me a range of drugs to trial and, in many cases, surgery would be one of the final options.
Most of the time having ITP is little more than an inconvenience, a specter that hovers in the back of your mind. When things are going well it can be easy to forget that you're unwell and that ITP is a dangerous condition to have.
On a lighter note, things at my end have continued to improve.
I recovering from the virus I fell prey to a couple of weeks ago and the double dose of penicillin seems to have prevented my catching any secondary bacterial chest infections.
Two weeks ago I was sitting on platelets of 36. That rose the following week to 66 which was a great relief. Imagine my delight today when I found out I'm now sitting on 184!!!
I couldn't believe it. I'm so stoked!
I said to the hematologist, "So it looks like the operation has worked after all."
He gave me a funny look. "Well, things are looking all right, for now. They did drop very low though. It may not last long," he said in a voice that implied he wouldn't be surprised if the crashed again in the near future.
I said, "Yes, but I was told they'd probably drop off after the surgery and then go up again."
He just looked at me. "Not that low."
Still, I refuse to let his pessimistic prediction get the better of me. I won't let myself worry about what will happen if/when I crash again.
I'm determined to celebrate this and think of it as a victory. Long may it last!