Tag Archive for nhs

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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What should I do?

Sorry this is long… but it has a genuine ‘what should I do?’ at the end, so bear with me…

As you know, on Thursday I came across the only medical professional that I’ve found incredibly difficult and rude.  I also suspected she wasn’t very good but I had no evidence of this. I blogged that if my INR dropped again today, I’d tell you the other bit of the story about her. It did, so – unfortunately – I now have evidence. So let me tell you the rest of what happened. Then you can advise me what to do about it.

(If you have no idea what I’m on about, read Seriously naffed off and This Too Will Pass first. But, basically the woman in the anticoag clinic was rude and didn’t listen to me and, I suspected, and now know, did the wrong thing too).

Anyway. My INR today is at 1.7. It needs to be between 2 and 3 to protect me from further strokes from the blood clot that’s still in my neck. Warfarin is the drug that increases one’s INR but everyone is different, so it generally takes 6 days to stabilize the dose. They take blood every day during those days and alter your dose accordingly until it hits and maintains within the therapeutic range. We’ve been working on this for 11 days so far, and I’m still not on a stable dose yet.  While they are doing the stabilising, you also have daily Clexane injections as well. The Clexane keeps your blood thin until the warfarin takes over this job; once you’re stable on warfarin, the Clexanes stop.

This is my personal graph – warfarin is dosage in mg, INR is the level it was at (tho days I didn’t get tested I’ve put in a midpoint to make the graph work (medics will want to know that!)) clexane is 1 if I had it and 0 if I didn’t:

So why am I worried about the nurse. Well, on Thursday I switched from getting my bloods/doses done in ‘trolleys’ (the acute assessment unit where I’ve been going every day) to the anticoagulation clinic. You can read previous posts for nearly all that story. The bit I said I wouldn’t tell you unless my INR dropped is as follows:

When she gave me the warfarin dosage and said I didn’t need the Clexane I questioned it and she said it was fine: I trusted her on this bit – after all, what do I know. However, I wanted to know how we’d know if that was doing the job, seeing as it was Thursday (28 Oct) and I wasn’t going to see her until Tuesday (2 Nov). I’ve been watching this every day and it seemed fairly obvious to me that if she didn’t knock up the dose properly that the INR would drop. I don’t want another stroke – thank you very much – so I asked the question. She said that if I was “that stressed about it we can get you back in to trolleys on Saturday if you want” and I said “well of course I don’t want, I’m asking the question really, if you tell me its fine then Tuesday is fine, I’m just checking you’re sure” and she said, “well I think you’re stressed about it so I’ll bring you in to trolleys again on Saturday”. (See previous note about how she then went on to give me a fatuous lecture on getting on with life (which still makes me mad, what the heck did she think I was doing? If I’d stayed as long as they suggested – i.e. until the warfarin was stable – I’d still be in there now!!!). Anyway, I kind of wanted it checked on Saturday because I wasn’t entirely sure I trusted her, so I shut up.

Anyway the INR dropped.  And because I had no Clexane cover, I had to go back to the hospital for a second time today .  (And getting back is no mean feat in itself, let me tell you!)

The good things to come out of this – and it’s important to note them! – is I got them to let me do the jabs myself, so I don’t have to go in tomorrow because I can do it myself now.  And, I feel safer again knowing someone sensible is on it instead of her.  And, my headaches have gone again this evening, possibly because of the drugs (?!), which is always good.

So… I felt rubbish last night… I felt really rubbish this morning. Which now makes complete sense. Then I had to go back to the hospital for a second time today to fix the issue. I believe this happened because she (a) didn’t listen and (b) didn’t take appropriate measures. I’m not going back to her clinic as, even if there is a problem with my GP taking over, I’ll simply find a way to ensure this doesn’t happen. However I have a quandary. I know I can’t do nothing, because there are stroked out 80 year olds – and, actually people my age who didn’t come out of it as well as I did – who are relying on her and not up to questioning what she’s doing.

(Heck, I was only questioning because she wouldn’t let me write things down in a way I could understand and kept snatching my yellow (anticoag record) book away so she could write down her version (Me: Are you going to keep snatching it like that? Her: Yes Me: We’re going to have to think about a system if this is going to work. Maybe you could write in a spare book so you have your own and I’ll bring it with me every time for you, and I can keep this one I’ve had for 2 weeks. Her: No, you can transcribe what you want but I’m going to do this as I want it to flow. Seriously. She had about 50 yellow books there: she could have done anything she liked; all I wanted was control of my own bloody book that Duncan had given me and I’d been keeping with the trolleys people.  It’s the only way I know to keep track of what’s going on. She was actually rather lucky she upset me and I was trying not to let her see I just wanted to cry, else she’d have gotten it with both barrels.))

Anyway. Bottom line. Her dosage was incorrect. And she stopped the Clexane which would have provided cover til I was back in range. If I hadn’t had made a fuss I would not have found out that my INR was out of range until Tuesday, by which time it would have been far lower; no one would have upped my dose (which they did today); there was no Clexane protecting me in the meantime (which there is now). Basically, I could have had another stroke or three.

With the strokes I had there is a 10% chance of death and a more significant chance of proper damage (which I got away with last time). At the very least I’d be in hospital all over again and starting from scratch. I’m ok, and this isn’t going to happen to me because, even in a mildly dazed state (which in hindsight I was) I was pushy enough to question her and take responsibility for my own care. The more stroked out can’t do this. Hell, some days I can’t do it.

I don’t think this woman should be working unsupervised. I don’t want to make trouble – not least because I’m in this system for another 6 months and I don’t think I’ll get a good run of it if they think I make trouble – but, basically, I think she doesn’t listen and is dangerous as a result. If she worked for me, she’d be removed from post immediately and not be allowed to work unsupervised until she’d had further training and been signed off as competent.

In most situations I’d take the problem to the person involved. That is still an option. I could write a letter to her and take it to her at the next clinic. But I won’t know til the day if it’s a day where I’m up to it.

So… what should I do?

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Seriously naffed off…

Seems like the next thing is working out how to change anti-coag/hemo clinics, seeing as the woman who thinks she’s doing mine for the next six months is the bitch from hell.  Hmm.  Well, its not like she’s going to read this.  Treat me like a stroked out 80 year old or a child and, seriously, we are not going to get on.  I explained this once.  I explained it twice. You don’t get a third go.  Not in the same 10 minutes.

I didn’t cry while I was in there, but there was serious danger of that happening several times on the way home.  Am seriously and properly f**cked off (Rob, if you know what the stars stand for, you’re old enough to hear it, tell Papa I said so when he moans.) The problem is I went straight to my GP and they can’t see me until next week, and I need to figure out to get this one sorted well before then.  In the space of a day the system has gone from flawless to seriously screwed.  Sooooooooooo  fing annoyed.

p.s. Libby – thanks for the emerg supply of tins of pre-mixed gin and tonics.  First one just cracked.  xx

[Edit:  Hmm. I have private health insurance… maybe THIS is what its for….]

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