This too will pass…

For all the wrong reasons, today hasn’t been about me.  Finally! And for all the wrong reasons, it’s been nice to feel useful again.  I can’t really explain any more without going into things that are not mine to tell.  (And the sad thing is that I think there are 3 people that will think I am talking about them today but, unless you’re 1000% convinced that I’m talking about  you, I’m not!)  But that hope thing that I mentioned before… keep hold of it, please.   Lucie and I have a saying, “this too will pass”.  It’s a mantra that always comes true.  Every single time.

The bit that was about me was the hospital.  The daily people in the morning were ace, as usual.  (If you need blood taken at Hospital Number 3, ask for Alaha, and don’t settle for anyone else if she’s there: she can do it without you even noticing, and gets it first time, every time). The afternoon, however… well, I already blogged that… I’ve not been that annoyed and upset with someone in a very long time, and I’m not feeling the need to revisit it, though I do need to find a way around it before Tuesday.   (Grrr.   Among the many things, – oh dear, I’m revisiting – she said, in response to a genuine “why do you think…” question, “I’ve been doing this for 5 years”; and me replying, “well, I’ve only been at it for 2 weeks so maybe you could give me a chance to catch up”, when I asked another question on how we were going to manage the fact my INR just dropped below the required threshold – see below – she gave me a lecture on how I “need to get on with life because you never know what might happen”.  Seriously??!?  You’re telling me that???!! Seriously??!!!  I was polite.  I swear I was polite.  I saved all the swearing for the blog below.  OK, I’ll stop now.  We’re so getting rid of her.   Somehow.)

So. My NRI dropped below its ‘therapeutic range’ today.   A normal NRI is about 1.  Mine needs to be between 2-3 in order to make the clot in my neck weak enough that it can’t do any more damage.  On Tuesday it was up to 2.8 so they downed the warfarin dose from 9mg to the more desirable 5mg.  Today my NRI was down to 1.9.  So they gave me a clexane jab for today, and upped the dose to 6mg/5mg on alternate days.  I get tomorrow off and go back on Saturday morning to retest/re-dose.  Today is the first time I’ve really thought about the fact that if they don’t get the dose right…. well, I’ve already got away with three strokes, I’ve no desire to play Russian roulette with a fourth.  I suspect the warfarin will go up again on Saturday.  If it does I’ll tell you one more thing about the woman above that we’re getting rid of….

mine clexane's 100ml but could only find pic of 80...

For those of you who sent questions…! As some of you know I had some scans a couple of summers ago after I had an issue that, annoyingly, came to a head with me falling over while in Eygpt with Perry.  When we got back there were blood tests and ultrasounds and ‘no cause’ found and it was all quickly forgotten.  But I asked the question today about whether the blood issues from then could possibly be related to the clot from the tear now.  I.e. could there be an underlying issue that my blood is a little too prone to clotting in response to trauma?

Turns out that Dr Duncan (I can’t remember his surname) has already written up that I should have a thrombophilia test when I come off the warfarin.  Interesting.  Perhaps.  Annoying, as it’s 6 months (ish) before we can do the test to find out (after I’m off the drugs). I’m therefore hoping that I’m barking up totally the wrong tree on this one.

Oh.  And you can tell things are getting a bit more normal: for the first time today I was wondering how I could pop into work during a significant two-day event that’s likely to happen next week. I know I’ll get shot for thinking it but… well, it’s my job…  and wouldn’t it be worse if I didn’t care at all?!

[Edit: just found out my GP definitely does a warfarin clinic… so I just need to get into that to get rid of that woman from my world!]

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5 comments

  1. Jayne says:

    We will be lining up to shoot your if you turn up to work next week :-)

  2. Kate says:

    you’ll be rugby tackled at the gates I’m afraid! x

  3. Kate says:

    Hey,

    Wish I could get you to the specialist who diagnosed me with protein C deficiency (I have a pre-disposition to blood clots, and had a massive DVT). This woman was amazing, handled the warfarin levels brilliantly and has left me in a position where I can manage my condition with ease and with the use of heparin.

    Hang in there, get rid of “the woman” and stick with Dr Duncan

    Hugs

    • Char says:

      Thanks Kate E – noted and will ask you about it. Want to be off the warfarin as soon as poss… not least cos I think I’d like a luke at some point (if you know what I mean). One for offline – phone number is correct – as always, I’m better on text and email and face-to-face than i am at phone conversation!!

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