04/01/2019:
Today was my appointment with the Haematologist. It's been two weeks since I got out of hospital, and I was ready to get my life back. I had enjoyed my little 'vacation' off work, but I was ready to get my clearance and get back into the swing of things. I couldn't sit at home doing nothing forever after all.
However, life apparently had other ideas.
"Your platelet levels on your last blood test were only 20,000," she told me. That was news I definitely was not expecting. I figured I was in the clear after leaving hospital, I was certainly under the impression that if I was still on my medication, then everything would be fine, or at least if my platelet levels dropped back down then I would get a call about it. But I had heard nothing, so I assumed my platelet levels were slowly on the rise.
A platelet level under 30,000 is classed as the 'danger zone.' I was back to square one, so it seemed. The only difference of course, is that this time they knew what was wrong with me.
So where from here?
First things first, we needed to up the dosage of my steroids. Obviously, they weren't working like they had hoped they would.
"We will try you on a higher dosage for a week, and then on Monday, you'll get another blood test and we will see what your levels are like after that."
"And if they're still bad?" I had asked her.
"Then you'll need to get another IVIg infusion."
I was slowly starting to realise that this was going to be a longer road to recovery than I had originally anticipated.
If the steroids don't appear to be working, then IVIg infusions are the next step. She told me they will try that up to three times, and then if my platelet levels still keep dropping after that, then we may have to go to the next extreme. Removing my spleen.
Every treatment works differently on everyone, sometimes it just takes a while to work out the right treatment.
This was escalating fast. I had gone into my appointment feeling confident that I would be told I was in the all clear, and that I would be back to work the next day. But now i was walking out with another six weeks off work, another five blood tests booked in and a plan set in place for the worst case scenario.
She sent me off to get another blood test straight after my appointment, just to see what my platelet level was like out of curiosity. She called me up later that day with my results. "So, your platelet levels have dropped to 18,000. We are still going to stick to the plan. Try the higher dosage of steroids for a week, and we will see what your levels are like on Monday. However, if you get any sudden bruising or bleeding, take yourself straight to emergency." This news didn't really surprise me. After my appointment, I didn't have high hopes for a dramatic change in numbers. I'm beginning to realise that ITP is pretty unpredictable, and its an ongoing thing that I might have to live with for the rest of my life. I'm just learning how to live with it and not let it affect me.
So here we are. Just waiting for Monday (14/01/2019) to come around to see if the higher dosage of medication is working. Cross your fingers for me. We are hoping for a higher number and some good news!
And now, you are completely up to date with my ITP story so far. Well, the important parts of it, anyway.
Do you have any questions? I've been doing a lot of research on ITP because I had never heard of it before. It's a pretty unknown and rare disorder and they have no idea what causes it. I'm trying to learn as much about it as I can. I'm definitely no expert, I'm just living with it.
I hope you have been having a better start to your year than I have.
Until next time, Georgia x
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