Idea that's worked for me

Hi, everyone -

I've been on the same kitchen-sink sort of treatment plan as many others on the board. After winding up in the ER once too often - and fighting with well-intended but largely ill-informed ER doctors once too many times - I hit on something that works pretty well. I had my hematologist print out a set of orders that I carry with me everywhere - and I do mean everywhere. If I have to go to an ER now because of the symptoms I'm lucky enough to recognize, I no longer have to waste precious time and energy convincing the ER docs that I have a clue what's going on.

My orders contain a treatment threshold (for me, if I'm over 20,000, they're to cut me loose), what drugs to give and at what run-rate (makes a world of difference whether you're on an ER gurney for 8 hours or 13), whom to call, etc. It stops the arguments about whether I need other tests (who the hell needs a CT scan because they have petechiae, but that's what they seem to want to do), etc.

Anyway, something you might want to consider if you're on the platelet roller coaster and you wind up in front of strangers asking for help. I call it my 'magic get out of jail free card,' and at the very least it tells the ER doc that you can spell the abbreviation "ITP" and you might - just might - know what it means.

Give it a try. And best of luck.

Deb

What makes you go to the ER in the first place? I'm curious because I've never been.

Ann wrote: What makes you go to the ER in the first place? I'm curious because I've never been.

I have never been to the ER either. But I guess if I was outside of my home area, I would have to go to the ER if I had issues. Thinking that is why she has her treatment plan with her.
Good plan Deb.

Good idea mngrrl

When mine are under 15,000 I wear one of those medical alert bracelets that you can hide info in- contact info, diagnosis in laymens and medical terminology; gave up on writing current meds since they change so much; Picked mine up at a CVS; I think it really just makes me feel better- driving in the rain in Mississippi is scary enough with plenty of platelets...