Just as things are starting to look like they might be on track, i get a nose bleed.
For anyone else, this doesn’t seem like a big deal, and on a good platelet level day, it probably wouldn’t really be a big deal to me ether. But when you have low platelets you’re known as a ‘Bleeder’ and let me just tell you now, it’s not fun.
You know what else isn’t fun? A 6 hour nose bleed. Surely that is some sort of a world record.
Anyway, that’s how I ended up here.
Back in hospital. My platelet levels had dropped back to 13,000 and I've had five days in a row of IVIg infusions to see if that helps.
And has it helped?
No. My platelets are still only at 17,000 and I've been stuck in here for a week now.
This whole ITP thing seems to be harder to get under control than I originally anticipated. It just doesn’t seem to be improving in the slightest.
The IVIg seems to work for a while, my platelets got up to 27,000 after the third day, and then it dropped back down to 15,000 on the fourth. So my body is attacking the platelets faster than it can make them so it seems.
I still feel fine, which is the annoying part. So unless something like this happens, it’s very much out of sight, out of mind.
At the moment though, it very much feels like a never ending battle and it’s tiring 😪
Who else hates ITP? 🙋🏻♀️
It’s very much a waiting game. Especially in hospital.
Wait for the doctor to come see you, wait for them to do a blood test, wait for the results, wait for the IVIg infusion... and by the time that’s all done, it’s bed time. And then I wake up and do it all over again.
So what's next?
The Doctors have come up with a plan. I know, they've said this before.
Hopefully, this is a plan that is going to work though.
Tomorrow I am going to get a bone marrow biopsy.
Sounds pretty scary, right?
But this is going to make sure that the doctors aren't missing anything, and will also confirm that it's definitely ITP, so it's the next step since the IVIg isn't working.
If the bone marrow biopsy comes back all good, then they're trying a new drug.
Rituximab. This is also something used to treat certain types of cancer, but also seems to have a good success rate in people with ITP. So hopefully we have some more luck with that, because their plan after that? Splenectomy. And that's what we are trying to avoid. Because if that doesn't work, they can't put my spleen back in and i don't particularly want a bad immune system for the rest of my life. Especially if it turns out not to be necessary.
So fingers crossed for no bad news from this bone marrow biopsy.
Anyway, that's where we are at the moment.
Have I missed anything? Probably.
All we can do now, is just wait for tomorrow.
Until next time,
Georgia x
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