Tag Archive for clexane

Two calls from the surgery

Two calls from medics today.  First the brilliant warfarin nurse called and said they wanted me to take 9mg a day all week (instead of dropping it one day a week to 6mg for an overall average of 8.4mg per day… yes, they really are that precise!).

Then 15 minutes later, another doctor I’ve never heard of rang, to say they’d thought again to take 11mg tonight before reverting to the 9mg.  Ok then.

Graph now looks like this.  I know I distorted the picture by being a ditz and forgetting a dose on 1st Jan, but I don’t think we need medical degrees to be puzzled by this one!

Anyway, it’s a lovely day.  This morning I got my hair cut, and shortly I’ll zip to the airport to spend my last few R&R days somewhere else.  If you don’t hear from me until I’m back, that means I’m using them wisely and sans laptop!

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INR down to 1.7

My INR has dropped to 1.7, which is .3 below the required therapeutic range (2-3).  I had already noted I was on a downward curve and expected to drop, but, of course, I’ve also managed to distort the true picture by forgetting a dose on New Years Day.

Good old INR Star can be told one has missed a dose, so it sprouted that the dose shouldn’t be changed and the level didn’t need to be checked for 2 weeks.  We’ve already overriden the date, deciding it should be checked next week, and also the doc has been emailed to check that the dose doesn’t need to change too, actually.

Having left the surgery, my NI friend pointed out by text that I hadn’t mentioned that my neck was aching and was rather worried about a possible connection.  It was probably a sensible thing to mention so I dropped back in and left the nurse a note, apologising I hadn’t mentioned, and asking her to add that to the note to the doc, just in case.

Of course, I’m a little bit worried they will say I need to go back on the Clexane jabs.  If it weren’t for the neck ache I’d rubbish the idea, as the vertebral dissection should be healed by now.  But I guess it’s as possible that it hasn’t as it is that I’ve just pulled a muscle or something, so… we shall see.

I’d rather not go back on the Clexanes.  I still have a box of 10 in the bathroom: I was going to give them back to Hospital Number 2 today when I pop in for more Warfarin supplies. I remember they don’t hurt or anything, but they are a pain nonetheless.  I’m flying tomorrow and, though I have a letter saying I can fly with a pack of them, I know that’ll just another hassle at the airport.  Also, it’d make me feel like I’ve taken half a step back.

They will call back around lunchtime if they want to do anything other than carry on with the Warfarin at the same dose as before.  So we shall hope they don’t call then, I suppose.

Oh well, onwards we roll.

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New Year’s Eve

hope

I have blogged a few times about my great fondness for the word ‘hope’.  So much so that it appears in my house a little (see right).

365 days or 525,600 minutes, that’s what it takes to get through a year.  And what an interesting and lovely year 2010 has been.

New Year may mean many things.  But in my experience it reminds us that either we’re not quite in the position we would’ve preferred and can’t see how that might change, or we believe that 2011 might be terribly exciting.  In my mind, New Years Eve is usually all about sadness or hope, even if we never admit that to another living soul.

I won’t tell what was happening in my world on this date last year, but let’s say I remember 30 December 2009 very well and was holding back a lot of tears 365 mornings ago (31st).  Something had raised it’s head, again, quite unexpectedly on the previous day.   So while I probably pretended to believe in hope for 2010, actually, I was also sad. Something I wanted very much was patently never going to happen, and I had to learn to finally, and again, let it go, forever.  And, this year, which doesn’t seem that long later, I enter a new year full of hope and excitement about what may come to pass.  There are some people who have become significantly more important than anyone before; there are new people that I didn’t know then; and there are my forever friends, who remain in my world wherever we may be.

Despite what I felt on New Years Eve 2009, 2010 was actually rather lovely and very kind to me, and I know 2011 is going to be my favourite year ever. In part, that is not in spite of the dissection and the resulting stroke, but because of it.  I guess God really does work in mysterious ways.

So if it happens that you’re secretly not enjoying the beginning of a new year, then please take a tiny piece of comfort from someone who knows that anything might happen for you next year.  Absolutely anything.  And chances are – I really believe this for you, even if you don’t – it will.  So have a little hope today. Or let me have it for you. It’s a whole new year tomorrow, and I can’t wait to see what happens!

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INR = 2.4 :-)

Yep.  As of 08.50 this morning, the official INR reading is at 2.4.  This is well within the theraputic range of 2-3.  This means, for the first time in many weeks, I don’t need Clexane injections, and I don’t need to pack them to take with me for next week.  The clexes ended at Day 44!

Now… all I have to do it maintain it…!  I’ve not managed that before either, but I’m away next week so next check is Monday 13th.

Thanks for all the moral support.  Another barrier against normality is crushed.  Horaay!

And yes, as promised, I am having champagne for breakfast, having crawled back – albeit fully clothed – under the covers.

image stolen from mediabistro.com

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Clexane: Day 44

I have an INR check at 08.50 in the morning.  On Monday it was up to 1.9, so it is almost certainly going to be over 2 tomorrow.  This means I will finally be able to ditch the daily 100mg Clexane injections.  This is timely, since I’ve run out of good sites on my belly.  The bruises are clustered, and the places that are not purple or yellow are ones I know will hurt, so I’d rather go over/between some of the older bruises!  Most people are on Clexane for 5 days, while the correct warfarin dose is reached, and then discontinued.  I’m on day 44.

!!!! DAY 44 !!!!

I think that’s quite enough, don’t you?  Besides, I have a brand new box of syringes and it would be nice to send them back unopened.  And I’m away at the residential thing next week, and I don’t want to take them too.  Enough already.  An INR over 2 is demanded.

And when this happens, my one allowed drink of the day will be spent on champagne.  At breakfast time. :-)

the end of the sharps bin..?!

Today was a thankfully lazy day.  We made bagels, from scratch, and they were yum.  We went to see a friend at work, we went for a beer.  Now I am on the couch in my pyjamas.  It’s been a lovely day.

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Breaking News: INR up

To 1.9.  Ok, so it’s not quite 2, but it’s much better than the 1.5 of Wednesday and definitely an upward curve.  Waiting to hear if I need to carry on the Clexane jabs.  I suspect the answer is yes, but I’m sure that next check (on Friday) will show that I’m above 2 and on my way to 2.5 and that means I won’t need to pack syringes for MSc residential.  In the meantime, we wait for the call to see if i need to ask Hospital Number 2 to deliver another pack of Clexanes.

Update at 12.55: Clexane continues until I get to 2.0.

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Failing the drugs test

Some stunningly sensible observations and questions have been raised about the graph in the previous post.  “That chart is very odd. It looks like the positive coupling between Warfarin and INR is very low.” And “is it anything to do with the Cadiss trial?

The graph baffles me too.  I don’t understand how raising a dose can allow for a reduction in the  element it aims to raise (my INR).  It can’t have anything to do with the trial I am on.  The trial compares the effectiveness of aspirin treatment with that of warfarin.  I am on warfarin, which is what I would be on if I wasn’t on the trial. The trial doesn’t dose me, they just take data.  They do provide the packets of warfarin, but they come straight from the pharmacy at Hospital Number 2 (where I was in the HASU).  So it’s not that.

The only pic of a stroke unit I can find without an old person in it: i stole the image, click on it to see its german neuro owner

When you have eliminated the impossible, whatever remains, however improbable, must be the truth,” or so say Sherlock Holmes (Conan Doyle). So I guess it’s me.  One can affect the effectiveness of Warfarin by eating things high in Vitamin K.  I’m not really doing that.  Initially they were relatively relaxed about me not worrying about this: only one  alcoholic drink a day, and vary what you eat every single day, and no cranberry juice, was about the sum of the advice.  But as this has gone on I’ve really been careful about greens and things that are listed as being on in the top 100 or so of being VitK rich.  They do still pass my lips, but in small amounts if they are incidental to other ingredients in a pre-prepped dish; I’m not buying them on their own.  I miss rocket, watercress and spinach a great deal: I reckon they made up at least 15% of my diet, as mixed bags of were my key must-have ingredients before.  But unless I’m eating something that I haven’t clocked is chokka full of the stuff….  Of course, there could be something underlying in my blood make-up.  But while they  will do a thrombophilia (or hypercoagulability) test after I come off the warfarin, both my stroke doctor and my GP think it will be negative.  Stroke doctor:It’s going to be a waste of time, but everyone your age gets one.

I have asked about other drugs.  They say there’s only aspirin and warfarin and warfarin works.  This isn’t true but it appears to be the NHS answer.  There is more information about other drugs, namely Pradaxa, Xarelto, and Rivaroxaban – see here and here.  But I don’t know that they are licenced for use for strokes/anti-coagulation in the UK, and in any case if they don’t know how to use them, I’m probably best off on the warfarin.  And I wouldn’t want to do the two-anti-platelet route– see here for why!

(Note: aspirin, herparin, clexane are all anti-platelet, warfarin is anti-coagulant.  That’s why I can do the Clex and the warfarin at the same time: they are two different ways of preventing blood clots, or preventing those that are there from getting out of hand.)

So… that’s where we are I suppose.  Next INR checks are Monday and Friday next week.

In other news, I’ve got some interesting things coming up – finally!  I’m going into work for a morning on Wednesday to observe a very significant event in our annual calendar that I usually mastermind (otherwise I’m not back until the new year).  My friend who came back from the warzone is coming to stay.  And I’m going to do to my residential MSc moduled from Sunday 6th.  More on those, I am sure, later!  All these things bring their own challenges, but I’m so ready for a good challenge.  I might even sort out my course work and see if there is anything I can start before life life starts happening again, in proper doses, next week!

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A picture paints a thousand words…

… and I have two, so why add to them.

 

Thankfully, my favourite people seem to be coming to me.  Thank you for that.

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INR down

My INR has not gone up to reach the 2-3 range.  In fact, it has dropped, from 1.8 to 1.5.

This is getting a tad ridiculous.

The dose has gone up from this evening to 8.3mg.  The Clexane syringes, which I moved to the top of the bathroom cabinet, will reappear less than 3 hours after I put them away.

Will draw a new graph when I have regained the will to live.

p.s. I’m not serious about the end of that sentence, but it’s getting very boring.  I’m bruised, I bleed, but the INR isn’t up?  At least the Clexane is working, I suppose.

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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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