Tag Archive for CT

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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Sorry i’ve neglected you

Yes, I’ve been neglecting you. I’m sorry.  I said it would trail off and it has!

I was asked today how often I was seeing medics.  The answer is that my INR checks are back to once a fortnight, for now.  I’m seeing my GP next week but then take it as it comes.  I’m seeing the neurologist and having another scan in May.  The plan is to come off the drugs in May.  That’s the bit I want.  Hopefully the weight will come off again then: I don’t like it.

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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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The Follow-up Scan

I’m not even surprised by the chain of events leading up to the scan today!

One of the benefits of the Cadiss trial is a scan at 3 months to see if the artery has healed (and one can come off the warfarin early).  This is what happened over the past few weeks to get to today:

  • NHS Letter 1: Appointment confirmed for 12 Jan
  • NHS Letter 2: Above appointment moved to 5 Jan
  • Conversation: Cadiss contact realises above appointment is for the consultant to discuss the scan, but the scan isn’t booked yet. 5 Jan cancelled.
  • NHS Letter 3: Appointment letter for 26 Jan.
  • Conversation: Cadiss contact says she’ll book the scan for before 26 Jan
  • Text from Cadiss: MRI booked for 14 Jan
  • NHS Letter 4: MRI booked for 31 Jan
  • Text from Cadiss: Ignore the letter re 31st
  • Appointment: Arrive to find they haven’t booked an MRI but a CT.  Text Cadiss contact to say I’m going to go with the flow.  She says she’s sending someone down to sort it out.  Nurses rush around and Cadiss decides a CT will do fine.  CT happens.

Let’s hope the appointment on 26 Jan happens too!

And finally, a lovely pic for you, because if I have to do that stuff then you have to see it (Kate)!  They put a cannula in your arm so they can shoot up contrast dye halfway through the process.  But this time when they removed it we couldn’t stop it bleeding.

That’ll be the warfarin working then.

nice...

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Hi ho, hi ho, scan booked for Friday

Many argue the NHS is inefficient. Perhaps I prefer to think of it as over-complicated, possibly due to it’s drive for efficiency…

i wonder if Siemens make the scanners at Hosp No 2?!

There are a few benefits to me personally from being on the Cadiss trial, which are an aside from the NHS and/or my Pru Health (which I’ve still never used…). In addition to my Clexane and Warfarin being hand-delivered to my home, and no prescription charges, I also get a follow-up scan at three months post-dissection.

CTs and MRIs are very expensive. So, instead of scanning again, the NHS prescribe the drugs that inhibit the risk of clots for six months, which should be much longer than it actually takes the dissection to heal. It’s cheaper than another scan. It’s rather sensible really, but it does mean one is on the drugs rather longer than one needs to be. And they aren’t fun. So the scan from the Cadiss trial is great; if it shows the dissection is healed, the drugs can be ditched early, and we move on. (To the thrombaphilia test). And it’s booked for this Friday. with the consultant follow-up on 26 Jan. It means I’ll have to leave work early on Friday, for I’m back at work today.

In fact, since I’ve timed this to publish at 07.15, I probably left the house about, oh, 5 minutes ago. So, you may sing along with me if you like:

hi ho, hi ho, it's off to work...

Two other quick things:

  1. As I now don’t see the consultant about the scan until 26 Jan (originally this was supposed to happen on Jan 5),  and that’s before we’ve dont the thrombaphilia test, I’ll keep the blog going a bit longer than planned. It won’t mostly end immediately after the actual afterstrokeparty, as promised. Posts will become more sporadic, but I’ll stop when it stops…
  2. All this started EXACTLY 3 months ago today.


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Act F.A.S.T.? So why 26hrs to diagnose?

A stroke campaign has been going on for a while.  With most strokes, if you give a certain drug within three hours, many severe impacts may be reversed.  For info click INFO or ADVERT to see the signs.

But I didn’t have any of these signs.

The only link was the left side of my lips felt numb, though this wasn’t visible. I didn’t think I could stand up and walk away (otherwise, I would have!) but I could talk. I knew speaking was taking deliberate effort, but I didn’t think of it as a symptom, and no-one else could tell. In fact, I was only ok about the ambulance being called because I was on the floor in the COO’s office and couldn’t get out of there fast enough by myself!!!

But, the brilliant first aider, Rebecca, did I talk about the left side of my lips being numb.  She said, “What are you thinking?” and I said “I think I’m thinking the same thing you are.”  We’ve spoken since and we were definitely both thinking ‘stroke?’.  But it seemed highly unlikely and I don’t think either of us thought about it again. I certainly never thought to ask at A&E.  I thought it was the cold that everyone at work had, knocking me for six. I think the first A&E doctor thought it was a panic attack or something, despite me not being at all panicked.

So the first A&E doctor was about to send me home, but the consultant marched in and did a hand nose test*, which I failed.  So he put a venflon in my arm and called the Neruos down.  They wanted me to stay overnight to establish what had caused it. My point is, I suspect the A&E consultant suspected it was a stroke from the start. I think that’s why he put the venflon in straight away, called the neuros, and took the first bloods. Even though no one else picked it up for another 26 hours and two more strokes later.

So why did it take more than 24 hours for a diagnosis?  Well, this is what I think I’ve deduced: the average age for stroke is 75 (my age starts with a 3); my stroke wasn’t caused by any general health issues and my bloods – presumably – came back normal; only 2% of strokes (and there are millions of them every year) are caused by a vertebral dissection but I didn’t even present any neck pain. So who’d think to look for a dissection or a stroke?

There was an initial CT. Either it didn’t show up on the first CT, or they missed it. The neuros worked it out on the afternoon of day 2, when they’d been called back to confirm I could go home (with a diagnosis of labyrinthitus).  But it was all worse than the previous day and I threw up when I opened my eyes or moved.  They confirmed with an MRI.

I do think that if they’d paid me more attention in the overnight observation ward that they’d have clocked it sooner.  But, as is human nature, they concentrated on the louder people, not the silent one who wasn’t interacting. (Perhaps there should be the odd reminder that says, ‘Do watch the quiet ones, they might actually be quiet because they are really sick.”  I remember on the handover in the morning the nurse saying, “She’s had a good nights sleep,” and having to pipe up, “Um, actually, I barely slept at all, I just can’t open my eyes without the world spinning.” “Oh,” she said, and moved on.)

So.  I guess there were points at which, if I’d been firing on all cylinders, I would have asked more questions, suggested things, or been more pro-active.  But, I’d had a stroke or three, so I wasn’t really there at the time.  But if I had been, there would have been two points in those first 18 hours where I’d have gotten very cross with them:

  • In the middle of the night I wanted the bathroom. I walked (well, ish, like a drunk, wondering if it was a good idea) to the nurses station to ask where it was.  Instead of walking back I had to sit in the corridor outside the bathroom until someone came by so I could for a nurse to help me.  It felt like my head had ‘popped’ while I was up, and was so entirely light that everything in it swam in graceful blue circles for a few minutes.  I remain convinced that this was the second, more significant stroke happening right then (and the doc in the Stroke Unit says I’m probably right).  But they missed it.  They didn’t even ask what had happened.  They walked me back to bed like it was a bit of an inconvenience and, as far, as I know, that was the end of that. I didn’t think to get bossy – e.g. find a doctor – but I’m letting myself off the hook: I’d just had another stroke!
  • However, I was very irritated for a moment the next morning. Someone asked the others on the ward what they wanted for breakfast and filled in their form for them.  They just handed me the form (no pen) like I could do it myself.  I couldn’t open my eyes to see it. I wasn’t hungry. I wouldn’t have been able to eat anything they put in front of me anyway.  But she came back and told me to fill it in, in a tone that conveyed, Just do it, and hurry up.  I remember being annoyed that she’d helped everyone except me. But I filled it in. I’ve no idea how. Why didn’t I just say, “No”?!?! I don’t know what I asked for.  I didn’t eat it when it arrived.  It got taken away again at some point.  (Again, I’ve never put myself on the hook for this one – by this time I’d had at least 2 strokes.)

The only time I remember thinking, “No, this is actually your problem to fix” was when, after the neuros had been down and ordered an emergency MRI, someone came to take me there. They brought a wheelchair, and expected me to sit up and move and be wheeled.  Right…. I said, “Sorry, I can’t do that”. He said, “You have to, we can’t move the beds in here”.  I think I just ignored him.  Funnily enough they sorted that out quite quickly. Amazing what you can figure out when you’re not given any choice.

Everything changed after the MRI. I got transferred the Hyper Acute Stroke Unit (HASU) at Hospital Number 2 straight after.  They knew exactly what to do about absolutely everything.  The contrast in behaviours is too vast to be expressible. I remain in awe of them, particularly two Irish nurses who were an utter Godsend.

But you know, while I can see the time it took could seem to be too long, I don’t think they necessarily got it wrong.  They have people in all the time who’ve just had an episode and sleep and go home in the morning.  If you think someone is one of those, why would you pay them too much attention? My kind of stroke is less than 2% of all strokes, and the symptoms were not indicative to non-specialists.

Though I’m highly rating the A&E consultant, because I think he knew right at the start.

——

* Note: Hand Nose Test: is when your asked to move your finger from the doc’s finger and your nose, going back and forth between them – I couldn’t do that with my left hand… I believe my response to this in A&E was a cheerful, surprised “well that’s new.).

touch my finger, touch your nose

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