Tag Archive for anti-coagulation

Questions for the Stroke Clinic

This one could be dull. It’s a brain dump from a brain injured.  You have been warned.

I’ve been considering the whole warfarin dosing thing.  I tend to think in diagrams (e.g. I prefer a map to a list of countries and capital cities).  So I did an up-to-date graph of my drugs v INR.  Warfarin ‘loads’, i.e. dosing is progressive as it stays in your system for 2-5 days.  My ‘theraputic INR range’ is between 2 and 3, so the aim is to get it to about 2.5 and keep it there.  So far I’ve never stayed at/over 2 on a consecutive blood tests:  it always drops back. I’m getting bored of it.  Warfarin is evil stuff anyway, so if it’s not working then I’m not sure if I want it to work or if I want to use it as an excuse to explore alternatives.

 

Notes for medics: Clexane is 1 if I had 100ml, 0 if I didn’t; Warfarin is in mg (evened out over the week since 11/11 when the dosing became a weekly planner of different per day  doses);  INR is actual but each INR data is noted on the day before the test took place, to make visual sense of the dose increase on the day an INR decreased.

I’ve been compiling my list of questions for the Stroke Clinic on Friday.  I’ve been back to the hospital loads, but it’s all been about blood, clotting and anti-coagulation appointments.  This is specifically about the stroke.  The deal is this is when they’ll be prepared to talk about timescales (though my GP may have beaten them to that, by putting an end date on my sick note for me). I suspect the list will be long, and I won’t ask half of them, but they include those below:

  • How come my face still goes numb sometimes (and when will the left side of my lips stop being numb?!) ?
  • How long until everything is permanently normal?
  • Why warfarin (esp. since its not working)?  Why not keep Clexane and drop Warfarin?  What about aspirin; what about Pradaxa?
  • When is the scan to see if the clot is gone?
  • Who organises the thrombophilia test?
  • I can definitely come off the drugs when the clot has gone?
  • Any issues around going back to work in Jan?
  • Sleeping – why don’t I?
  • Flying – am I cleared to fly?  How do I get a note to carry syringes on flights?
  • Travel insurance – do I say stroke or vertebral dissection or clot or… what?  If stroke, do I say 1 (stroke event) or 3 (strokes)?
  • Is there anything that won’t return to normal?
  • Should I be worrying about headaches/neckaches? (I’m not, but someone else is!)

Can you message/email if you know/think there are more?

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V quick update: GP says yes!!!!

:-) :-) :-)

I’m in the GP’s warfarin clinic.  In fact, they already did my INR and it’s up to 2.0 this morning, so we can lay off the Clexane tomorrow and recheck on Thursday.  I think they’d like the warfarin to get to me a nice, stable  2.5, which is the middle of my required range (2-3).

This is fab on several levels: (1) actually met my GP and she’s utterly lovely; (2) I can walk round the corner instead of treks to hospital to do this; (3) I trust them; (4) well, um, they keep saying “she’s really young” when they talk about me in front of me.  That absolutely counts.. right?!

The GP, who is a warfarin specialist – thank the Lord she’s at my surgery – has only seen one dissection before, and that was in a kid who had an accident with his bike.  I’m learning that being an NHS novelty is also, sometimes, quite helpful.

Now do excuse me.  I have to call and cancel my appointment tomorrow with she-who-shall-not-get-another-mention.

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Seriously naffed off…

Seems like the next thing is working out how to change anti-coag/hemo clinics, seeing as the woman who thinks she’s doing mine for the next six months is the bitch from hell.  Hmm.  Well, its not like she’s going to read this.  Treat me like a stroked out 80 year old or a child and, seriously, we are not going to get on.  I explained this once.  I explained it twice. You don’t get a third go.  Not in the same 10 minutes.

I didn’t cry while I was in there, but there was serious danger of that happening several times on the way home.  Am seriously and properly f**cked off (Rob, if you know what the stars stand for, you’re old enough to hear it, tell Papa I said so when he moans.) The problem is I went straight to my GP and they can’t see me until next week, and I need to figure out to get this one sorted well before then.  In the space of a day the system has gone from flawless to seriously screwed.  Sooooooooooo  fing annoyed.

p.s. Libby – thanks for the emerg supply of tins of pre-mixed gin and tonics.  First one just cracked.  xx

[Edit:  Hmm. I have private health insurance… maybe THIS is what its for….]

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