Tag Archive for blood

Your smile makes me smile

:-)   :-)   :-)   :-)   :-)   :-)

I may have got round the problem of the anticoag woman at Hospital Number 3 via my GP’s receptionist today. (As opposed to the unhelpful one yesterday: Her: “No we haven’t got any GP appointments until Friday week.” Me: “I had a stroke a couple of weeks ago; does that make any difference?”  Her: “No.”  Me: “Ok, can I book to see a practice nurse.”  Her: “Well they aren’t available until after that”. Me “Shall I go to A&E with my non-emergency then?” (No, I didn’t mean it!!)  Her: “Ok.”) .  Anyway, I tried again this morning and this one said, “You can see the GP that specialises in warfarin first thing on Monday, is that ok?” Is it ok? Yes, please!!! Because potentially this means I can call up nightmare anticoag woman on Monday afternoon and tell her she has a free slot on Tuesday.  Hmm. If at first you don’t succeed, ignore the utterly unhelpful receptionist and seek out the good one. So now I just have to make sure the GP is nice and chilled about the CADISS thing. Easy…!(?!)

I got my face back today.  Though it’s looked normal all along, the left half has been numb, to varying degrees, since this all started on 11 Oct (18 days!!!).  It’s slowly reduced but this morning I got it back properly.  The left half of my lips are still a bit tingly but the rest is mine again!!!  (Hmm, as I type I realise it’s a bit more numb again, but we’re talking in a majorly minor way, if that makes sense!!)

So I have my face back, I can walk, if a little more slowly than usual, and…. hmm… there is one more significant thing that I had to re-learn, but I’m not ready to blog that one yet!  Anyway, I admit I’m tired and can usually feel my head, but generally it’s all good; particularly if I can use my GP, which is literally round the corner, instead of the hospital for the whole bloods bit.

Speaking of which, I’m back to the vampire palace tomorrow morning for bloods, so we shall see what the old INR is doing with itself.  After that, assuming the GP comes through, I won’t need to go back to the hospital again until the stroke clinic.  I think I’ll actually miss the people in trolleys (where it’s done).  I’ve been there nearly every day as an outpatient, so they’ve always known me as someone who just pops in every day rather than having the ‘proper-patient’ mentality about the whole thing.  And they’re always really nice.  They listen as well as speak so I always know what’s going on, and I get to tease the docs about their rubbish blood taking skills and demand Alaha or the charge nurse who’s name I can’t remember (Mark, perhaps?) instead.  And when the haematologists forget to call me  in the afternoon with results and corresponding dose changes, which is about 50% of the time, I just call trolleys and they chase them up or get whichever doc is there to do it for me themselves. So it always feels like a solid place to know and be.

All the naff smilies in this post represent my smiles today.  For the prayers among you – thank you… I think I’m on the road to cracking the bloods thing and my friend (number 3 below) has had already gotten a brilliant helping hand through the bumps this afternoon.  I have the print shown above (“your smile makes me smile“) on my stairs and today this is proved, once again, to be true.

:-)   :-)   :-)   :-)   :-)   :-)

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Focus, blood and warfarin

So, as well as visitors, five especially lovely things happened today.  (1) I got the biggest parcel of flowers ever – thanks CT; (2) Mark and Roly sent me an ipad to borrow so I don’t have to carry my beloved macbook up and downstairs, (3) a friend who needed to sort out leaving his job and returning to the UK did so today and returns in March, (4) Dad worked out what was wrong with the washing machine (rogue programme set) which is now resolved.  (5) Mark only gave me 4 lectures, which is much improved on the norm (hehe, just added that to wind you up! ) It was a good day.

In other news, apparently, I can focus on people better than I could late last week.  No, I didn’t know I couldn’t do that either, but it seems people don’t tell me things until after they’ve passed.  To discover this is highly frustrating. Who knows what they’ll tell me about this week when its next week.

Some of you have asked about (a) my bloods and (b) warfarin info, so:

  • blood: INR is at 2.8 today so they’ve downed the warfarin dose to 5mg and everyone’s happy.  So no more bloods until Thursday.  Then they want some in the morning and some in the afternoon.  Vampires. All I can say is good luck to them.  Today they took three goes to get some, ended up with the smallest possible butterfly needle, and even then I didn’t give up quite enough so we had to get creative to get the amount left in the butterfly tube into the vial. There is one decent vein in my left hand that they refused to use.  I asked why but didn’t like the answer (“I’m leaving you one good one untouched in case you need a new line”.  Hmmm. I think not.).  Anyway, if they think they can get it, twice in a day, go for it. In the meantime, I’m sporting a rather nice bruise collection if anyone has any they’ d like to compare.

blue butterfly

  • wafarin: I don’t know all the info yet.  It is true that no one official has told me what the real deal is with it.  By the time I got it, I’d been through a whole gamut of heparin IVs, fluids, clexane jabs, and god knows what else, and no one asked if I was ok with any of it. Remember, I wasn’t in any position to mind anyway.  I think I signed for the first MRI but I’m not sure why since I’d already had a CT, x-rays and the first venflon in my arm and not signed anything at all.  But couple of people strongly hinted I should find out about the warfarin so, obviously, I googled.  Anyway, the point of telling you this is that today I read that, should I ever get pregnant now – which one shouldn’t do while on warfarin because your child will bleed to death (nope, they haven’t told me this either… seriously!!!!!!) – they’d likely say I’d to have an epidural from the outset or plan an elective c-section so as not to increase the risk of this happening again.  I’m not planning any of this in the next few months, but I’m starting to get the hint that there may be ramifications from this for a long time.  From a teeny-tiny tear in my neck.  Which are apparently – though mine wasn’t – most often caused by hairdressers sinks, neck massages or giving birth.  You have been warned!!!

warfarin... mix n match dosage packs

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Fish sandwiches and work

Hmm.  Craving fish sandwiches for breakfast.  Well, that’s new!!!  I guess they’re supposed to be brain food?!  Though, it’s also the first day I’ve slept right to the alarm and wondered f I can be bothered to get up.  I have to though; due at the hospital in an hour and fifteen.  Good job really or I might’ve just stayed in bed today.

Overnight I’ve been particularly appreciating how lucky I am with where I work right now.  (I’d mention it by name but locations etc. are being deliberately withheld, as this is an open blog.)  Not only did the amazing Kate come from work, as well as a fair number of my friends, but there are other things that I have the luxury of not having to worry about, simply because my work does sick leave.  Being paid, for example.  Some people work in places where, if they don’t show for a shift, they don’t get paid.  I can’t imagine what that kind of stress would do to me right now and, as I keep saying, I got off lightly.  Having a job to go back to: the sheer luxury to know they aren’t going to fire me if I’m away for a few weeks.  I started thinking about all those people who start all of this rehab stuff also wondering how they are going to pay next week’s mortgage/rent and buy food.  Just thinking about it is pretty much unbearable. So, in case I forget to say it later: thanks to work.  Really.  I’m very grateful.

yum yum

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Money and cheese

  • Days since neck injury = unknown
  • Days since first stroke = 11
  • Days since last stroke: 10
  • Days since I left the Acute Stroke Unit: 7
  • Days trying to switch to warfarin = 4

I have to stay on the daily Clexane injections until the warfarin does its thing and knocks my INR up from 1 to between 2 and 3.  Today is Day 4 and we’re at 1.3.  Yesterday was 1.2.  This is supposed to be sorted by Monday! When I come off the Clexane I don’t have to go to the hospital every single day any more, so I’m hoping that adding willpower to the mix will work. In reality, the blood doctor calls every afternoon with the morning’s blood results  and she put up the dose. I’m now on 9mg which meant taking one 5mg + a 3mg +a 1mg tablet.  It took me a couple of minutes to work that out, so thank the Lord I’m not ancient and can still count!

The NHS machinery is starting to work again though.  Today I got letters about a hematology appointment next week, and to say I’m now on the waiting list for the physio’s visiting the house.  If they don’t come pretty soon there might not be anything left for them to do!  I’m still waiting for the one for the all-important stroke clinic.  The deal is that’s the one where they have to talk to me about potential timescales on all sorts of things; something they are reluctant to do, ever.  And if you think  the focus my life has suddenly become a strange mix of friends visiting, walking upright without falling over, sleeping, and cutting deals, you would be utterly right.  Welcome to the brilliant NHS.

I know at some point soon, I’m going to be really bored with the recouperation/rehabilitation thing.  I sleep quite a lot.  I have lovely visitors (do keep coming!) and the television is ok now – though I much prefer choosing something from my iplayer favourites to mindless channel surfing.  I considered a film today but couldn’t be bothered.  Flicking through magazines is ok, though I can’t be bothered to read the articles.  My text books loom large and untouched in two weeks.  I can type, but other than the blog and some emails, well, devising a plot might take somewhat longer than usual.  So suggestions on what to do with a slightly slower than usual brain that comes with a tired left arm are very welcome.  Though should anyone be considering suggesting knitting, please don’t. It’s not gonna be that bad.

And finally.  My most fun visitor today was Mia Eyre, who belongs to Jan, Jamie and Josie.  I think Mia is 3 and she told me today, quite spontaneously, that what she likes best in the world is, money and cheese”.  Mmmm, I’m with her on the cheese. I think she’s got a fantastic future in front of her!

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The day my friends took me to the pub :-)

 

The Vampire Palace

By definition, a lot of people who have had strokes have cognitive problems. So it worries me that when I do my daily stint in Hospital Number 3 – aka the vampire palace – I have to correct what they’re doing to me, or remind them to get on with it.  On Tues (first day) I had to refuse to be stuck with drugs not in my pack and make them ring my doctor to correct the orders. On Wed I explained it was Clexane but no blood, when they thought it was the other way around (I traded in the end. I gave them unnecessary blood in return for their phone call to check about the shot.  I wouldn’t mind, but it’s the Clexane that’s making it impossible for another stroke to happen right now!!!). Today I just had to remind them in ‘trolleys’ (the dept where they take the blood), after an hour of them chatting to each other about the layout of the beds, that if they could take 3 minutes to take blood, I could get out of their way.  So tell me this… what happens when someone who’s not so aware (i.e. the other 99%) comes in and simply does what they are told?????  Ok, rant over.  Other than this they’ve all been really great!

[Oh, you’ve asked two things: 1. what’s a “vertebral dissection”? an answer is here and summary of that is an “increasingly recognized cause of stroke in patients younger than 45 yearsassociated with 10% mortality rate in the acute phase… those who survive the initial crisis (i.e. 90%!!!) do remarkably well, with long-term sequelae rare” and, 2. what is my NRI? a normal NRI is about 1.  They are looking to get mine to between 2-3 using warfarin, which will mean my blood is sufficiently weaker than yours. Today it was at 1.2  so I continue with the daily clexane jabs which keep me covered until the warfarin does its thing and kicks me into the right zone.]

So. I was warned there would come a day when it felt like I hadn’t made any progress.  Today was almost that day.  I had to wait ages at the vampire palace, and then my arm wasn’t giving up any blood.  I’ve got little veins so this has been a recurring problem.  After being stuck 5 or 6 times on a couple of occasions, a brilliant nurse (Lisa) told me I should take charge and say they could only use places I know gives up blood the first time.  Unfortunately, even that failed today but, instead of sticking me again, this doc decided to just wiggle the needle around til he struck a vessel! (Top tip: nurses are much better than this than docs so reject them in favour of a nurse wherever possible!). I was following this with a visit back to the ward to see a friend who happens to be a doctor on it (though she was on a course while I was residence).  On the way I had my first dizzy/nauseous spell in days, and ended up sitting on the floor in the corridor for a few minutes while it passed.  But it did, and I believe it had a lot more to do waiting around and the clumsy blood taking skills inflicted on me than the injury in my brain!

Following a couple of hours sleep, this afternoon was a LOT more exciting.  Having not been able to venture past the end of the street I’ve also been also desperate to do something ‘normal’ again, and wanted to visit my local pub.  I’ve been warned that being in busy or loud places might be a bit overwhelming for a while and to pick quiet places, and my local in the daytime fits the bill.  I’ve also been keen to get outside, but I’m aware it’d be a dumb move to go on my own quite yet. So, during a fab visit from the Property Boys (Dave & Steve) we went a-wandering to the local and were later joined by Jonno. I know Dave was worrying the whole time (!!) so thanks to all three of them for indulging me on this one, and for the arms there and back. I’m so glad I got to have my first half with you three: doing something completely normal for the first time was so entirely good for the soul that I can’t really explain it!

The very best bit of the day, however, as you may have gathered by now, is always the bit that made me laugh most, and today Jonno is responsible.  Upon leaving my house he gave me a hug and said, “It’s been really good to see you.  I’m glad you’re not a veg.

veg

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Bruises Are Good

While I’m waiting… couple people have asked if this could happen to me again.  The answer is yes, but it’s highly unlikely.  This was a tear in my artery: a trauma; a freak thing by all accounts.  It could happen, but then I could win the Euromillions twice too!!!

While the clot is still there, the drugs thin my blood to make sure it can’t do any damage.  I can prove the drugs are working… check out these bruises.  These bruises are good.  They mean the drugs are working just the way they should!

brusies are good

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