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Aside from the Department of Health and Human Services, does anyone else on this forum actually know what's going on here?
I’m looking for answers too, so I figured I’d jump in here instead of starting yet another thread. 😉
Maybe I didn't phrase that quite right; I’m not saying he needs to go in for a bone marrow biopsy!
What I meant was there's no reason to panic if the blood work looks clean, but you can't see the whole picture from those results alone. 👍
I see people are already finding ways to misinterpret what I wrote. Well, whatever. If they want to take it the wrong way, let them. 🙂
rustypanther80 said:coppergardener, did you make it to your appointment? I’ve started noticing red spots all over my body too—about 30 of them, mostly on my arms and chest. I didn't think much of it at first, but once Google started serving up empty articles linking petechiae to leukemia, I panicked and rushed straight to get blood work done. My CBC came back normal. I assume that rules out leukemia. What do you all think? If the blood work looks fine, is there any need for further testing?
Honestly, I think they should go for a bone marrow biopsy just to be sure. A standard blood panel isn't always enough to see the full picture.
Make sure you report any petechiae to your doctors, along with any other changes you notice!
As Sam Scott4 mentioned, these things usually point to low platelet counts. I’m speaking from experience here—I spent two months stuck in a hospital bed because of this until they finally had to take my spleen. That's usually the last resort when standard steroid treatments just don't cut it.
I honestly don't know enough about suspected Cushing's syndrome to weigh in, so I won't pretend to be an expert, but if anyone wants to talk shop about thrombocytopenia, I'm here! 🙂
So, he’s finally out of the hospital after a hell of a struggle. Now we’re just settling back in at home and waiting for those steroid side effects to finally wear off. 🙂
I won't be forgetting the hematology ward anytime soon, nor the abdominal surgery unit, but honestly, I'm just glad the worst is behind us.
Right after the spleen removal, the platelet count started climbing immediately (65-131-272). Everything else seemed fine, no extra complications, so we were discharged on the fifth day post-op. Seven days after getting home, I went in for a follow-up, and the count hit 583. That’s high—maybe it'll go even higher—but according to the doctor, it's expected. They say it should stabilize toward a normal range eventually, though it might stay elevated. For me, the main thing is that they never drop low again. 🙏
Then again, I’ve heard that being too high isn't great either. Apparently, anything over 600 isn't ideal and can act similarly to when they're dangerously low. I've even heard mentions of thrombosis.
Is there anyone else here dealing with ITP and living without a spleen? 😁
Anyone with a similar situation? What are your platelet trends looking like, and how are you handling life without a spleen?
I'm already exhausted, but I know I haven't even truly rested yet. I'm still dealing with that stiffness from being bedridden and my muscles feeling totally neglected.