Tag Archive for warfarin

Losing the warfarin, and Chaseley

Oops.  A quick update.

I saw the neuro (Hospital 2/Dr 4) on  May 3rd, and came off the warfarin.  The difference is quite amazing: I now need so much less sleep! Before, getting beyond 10.30pm was a chore.  Now I see midnight and 01.00 roll by and think I need to think about sleeping! It took me a few days to notice that was happening, and another to work out why!

And I’m suddenly back to walking 18,000ish steps a day without even thinking about it. This is the best thing, to be honest, as I’m desperate to lose the weight caused by utter inactivity and way too many lovely treats during the first few months.  Vanity, I know, but also cost effective – I’m simply not buying larger clothes!

baby aspirin

So I’m glad to have switched the high doses of warfarin for a forever daily baby aspirin. Though my new friend from Chaseley (see a few paragraphs ahead) says I may make up my own mind on that one a little further down the track…

I had an MRA (an MRI of my head an neck) on Friday last (“Er, you’ve had quite enough CTs in the past few months, let’s do an MRI”). I was hoping this meant I’d be in and out in ten minutes.  But no, there’s the whole rigmarole of hospital gowns and cannularsfor contrast dyes – though without the slightly weird effects of the CT contrast.  But the staff at Hospital Number 2 are just so nice.  I don’t know whether it’s just an utterly different culture to Hospital Number 3, but the staff certainly smile more and that makes a massive difference.

And yesterday, well that was a freak thing…  I went to a She Means Business Network Lunch. It was lovely.  Set in a priory situated in rolling hills; greeted with champagne; got to know some great people a little.  But bizarrely, I sat next to the CEO of a charity that looks after people who have brain injuries of various kinds.  So she was fascinated by the stroke and I was keen to hear about how those who have the worst kind of outcomes and need the most rehab might be supported.

The answer is that, outside the NHS, support is often from charities, and there aren’t many like The Chaseley Trust.  They work with anyone over 18 on a residential, day care or rehab basis. And about a third of their residents are former Army, Navy or Air Force.

So if you have a spare tenner and you’ve been wondering what to do with it, maybe hit the graphic above and go to the bottom of the resulting page, click the donate button, and give it to Chaselely?  Like my stroke, it’s not very sexy, but it’s a very good cause.

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the dilemma

Tuesday is my last day at work.  We have a big event during the day (which I was asked to stay for) and then my leaving drinks in the evening.  I was thinking I’d make an exception and actually drink a bit.  But the dilemma is this… I have bloods being taken at 0900 the next morning.  Probably the last ones before I next see the consultant.  As I want to come of the drugs now – it being six months on Monday – I don’t want a dodgy blood result because I had a few glasses of bubbles.

Hmm, maybe I should just move the bloods appointment..!

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Mark strikes again…

Well, after three phone calls from Wales, a thoughtful gesture of someone checking if someone else had a warfarin stock, we nipped into A&E and they gave me three days supply in under 45 minutes.  Am growing to love the provinces.

There was a moment though.  They came back with a cute little bottle containing 3x 3mg tablets (blues, for those in the know), because I said my dose was 9mg.  I had to say, “Um, it’s 9mg a day.”  They disappeared and came back, “That’s quite a hefty dose, are you sure?”. Um, yes… They were great though.

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so, i forgot the meds…

I’m away for the weekend, in Norn Iron.  I therefore dutifully decanted 6 days warfarin (even though I’m only away for 3) into the cute little pill box my friend Patricia gave me for just this purpose.

I arrived in Norn Iron, and I can only assume the pill box is still on the bed where it fell, presumably, as I packed between the small case and the slightly-larger-than-the-everyday-one handbag.

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Consult moved

Now seeing the consultant at the beginning of May instead of the end.  Found out the reason I can’t see him in April is because he’s away.  For the whole month.  Lucky him!  So maybe, just maybe, I’ll be off the drugs by May 2nd?  Here’s hoping.

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Fit for Work?

So I’m asking Hospital Number 2 to move my stroke consult from the end of May to the end of April. If they don’t oblige then my lovely GP is going to ask them again.  The hope is that I can come off the warfarin at the six month point, which is the protocol, and then we’ll be done.

I’m about to go on holiday for a week, and then I only have 2x 4 day weeks and a 2 day week left at work.  So I asked for a ‘completely fit to resume normal duties’ (after my holiday!) note and she obliged*.  The only difference really is the ability to be on call outside office hours, which I’ve not done since I’ve been back, and it’s utterly likely they’ll not bother to put me back on only to take me off again a couple of weeks later (though they might; I think Kate would like to turn her phone off when she cycles!!!).  The interesting comment though was the GP saying that if it was a long term gig she wouldn’t have given me the note.  Carrying a phone and being ready to respond 24/7/365, even if it only actually happens, on average, two or three times a month, would not be sensible, for anyone?

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INR = 2.4 (it’s steady!)

INR is at 2.4, so I don’t have to get that checked again for another month.  I’m also on a steady 9mg a day.  Apart from knowing where one is, it’s also useful in terms of prescription refills as I can just ask for packs of 3mg tablets.  In the past I’ve had shelves full of 5mg, 3mg and 3mg boxes so I can make up the right dose for the day.  I’m close to out of pills so I just asked for 288x 3mg.  Enough, for those of you working it out now, to last me to my next consult in May.

I’m hoping I can come off them then and we can put the whole thing to bed.

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INR = 1.9 (too low…)

Yep, it’s been a month since they last checked and it’s now just below the threshold.  So now I’m back to a fortnightly check.  If I  were to hazard a guess I’d say it’s been bouncing around all month, as usual.  It doesn’t seem to make much difference: the dose might be stable now but I seem to make it bounce around.  Anyway, we’ll see in a couple of weeks.

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To be continued…

Before the afterstrokeparty, Kate told a friend they’d enjoy the evening because it was “such fun” seeing me drink!

It’s true: one glass of wine is enough to make me seriously tipsy, so I drink less than most.  In fact during the whole afterstrokeparty I actually only had two drinks (and a couple of diet cokes). Equally, I get sober really quickly too.  I mention this because I’ve now got an explanation that also explains my warfarin experience.  I metabolise drugs very quickly.  It explains the higher doses of warfarin, it explains getting tipsy and sober on alcohol faster.  It’s not at all uncommon either, nor anything to cause anyone any angst.

Yes, obviously I saw the consultant at Hospital Number 2 for the Cadiss trial today!  This could be a long post.  I was in there about 40 minutes.  So if you really want to read on, make a cup of tea, find a comfy spot, and then proceed.

photo stolen from clairebelles (click to link)

You may need a quick reminder about the Cadiss trial for context.  It’s a trial that compares the post-stroke-as-a-secondary-to-vertebral-dissection effectiveness of warfarin verses aspirin. I’m on warfarin.  As part of their data collection, Cadiss provides drugs without prescription charges for 3-6 months, a follow-up scan at 3 months, and a senior neurological consultant to tell you what the new scan says.  We were hoping that the 3 month scan, which I had the other Friday, would show the artery was healed and the warfarin could be stopped earlier than the 6 month regime prescribed by the NHS standard protocols.   As it turns out, there are now additional benefits for me (in my opinion) as ongoing care is moving back from Hospital Number 3 (and the nice Dr D) to Hospital Number 2 (and the more senior Dr A).

Why are we talking about ongoing stuff?  The scan showed that my artery is still occluded (blocked) and so, for now, I remain on the warfarin.  As my boss texted, “not what we wanted”.

Dr A started out by reading the notes on each scan, which was kinda cool because I could see the screen over his shoulder and spot key words.  I’d forgotten quite how many I’d had.  A CT on 11 Oct, an MRI on 12 Oct, and another CT with contrast (dye) on 13 Oct.  He was most interested in the scan from the other Friday.  It was supposed to be an MRI but due to a mix up it was actually a CT with contrast.  I don’t know what the difference is in output but it seemed to give him the info he needed.

Dr A’s taken my case back over to Hospital Number 2.  I “can still go” to Dr D’s February appointment at Hospital Number 3 (which is when I’d expected to be signed out of the NHS stroke system) but Dr A told me to tell him that “he isn’t allowed to make any decisions, I’m in charge now”.  I like Dr D of Hospital Number 3; he’s great.  But the place I felt safest and like everyone knew exactly what they were doing was in Hospital Number 2.  I know this is because I was in the HASU there, so it was all about the setup, but it still remains that I’m glad about this decision.

As well as showing that the artery’s still blocked, the scan also showed a load of other things from the event in October; a little “meteor shower” of hits to my brain, which isn’t that surprising given I had a clot breaking up all over the place for a day.  It’s disappointing I have to stay on the Warfarin, and this all goes on until at least May, but these things happen.  The beauty of the scan is that we know what’s going on and it can be managed, and that’s the important bit.  So what next?

In May there will be another scan, followed by another clinic with Dr A.  Apparently the artery may or may not remain blocked.  An occluded artery isn’t a problem, as there are 3 others supplying blood to the brain, as long as it’s not capable of repeating the ‘meteor shower’ activity.  I will be on “something called aspirin” (!!) forever, but what happens in the immediate future – i.e. getting me off the dreaded warfarin – now gets decided in May.

What else?  The snippets:

  • There’ll be no thrombaphilia test, he agrees with Dr D that would be a waste of time
  • He became the first to ask about stress at the onset of the issue; it can be ‘associated’, though my blood pressure is perfectly controlled… (I’m secretly quite proud of my blood pressure: it’s been measured a gazillion times and, while I wasn’t paying attention for the first few days, since I’ve been out of hospital its always been on the low side of normal, which is where all the medics seem to think is rather excellent)
  • Don’t get pregnant until I’ve seen him in May… no, I haven’t any immediate plans!… but “I wouldn’t want to see a planned pregnancy until I’ve seen you in May”.  Um… ok!

So basically, it’s not over yet.  Ho hum.  Updates will occur, sporadically.  I’m neither joyful nor upset about any of it, but instead just glad we know where we’re at.  The continuation of the warfarin, however, is a bit of a drag.

But two more lovely things also happened today: another lovely friend commented on how welcome and part of it all they felt at the party which again is testimony to both you and she.  And my flatmate E, well, she decided that scan-day meant presents.  So she got me these:

 

Shoes...

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INR = 1.7

My target INR=2.5

My theraputic INR = 2-3

My actual INR = 1.7, down from 3 last week, i.e. it bounces around without apparent rhyme or reason.

Go figure!

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