Tag Archive for cadiss

Travel Insurance: Tick

So I have an annual travel insurance policy with an insurance company that costs me about £40 a year.  I suspected it wouldn’t cover me for what is now a pre-existing condition – i.e. a left vertebral dissection that led to a stroke.  I was right.

The insurance company got a nurse to ring, where upon it took an age to answer her questions because the answers aren’t straightforward when you’re trying to not withhold any detail they can later claim that you withheld.  So questions like, “When did you last see a consultant and when will you next see a consultant?” involve explaining that I’m on the Cadiss trial so I see consultants more than I would’ve if I hadn’t volunteered for that.  Obviously it’ll be held against me as she then has to record the frequency is actually more than it would have been if I hadn’t volunteered. I know it has other benefits, but so much for karma!

She ended by saying my current policy wouldn’t cover “the condition” so the insurance company has to ring me back.  I pretty much knew that they would want a premium on top of the standard, but I can’t imagine what that might be, particularly when explaining it all took about 30 minutes.

On the other hand, on the recommendation of a nice man called George, who is on one of many the dissection/young stroke Facebook forums to which I now belong, I called a company called Able2Travel.  In about 5 minutes flat they offered me two options on annual policies, one for £155 and one for £185.  The latter seemed to have a few more benefits so I’ve put a reserve on it.

When the original company comes back, if it costs more than £185, I’ll simply take up Able2Travel’s offer, which seems more than reasonable under the circumstances.  Which is exactly what George told me it would be, bless his helpful cotton socks.  It’s rare I come across a service company that does exactly what it says on the tin.

So, while I have no idea how useful they are if one claims for something, for sorting out a policy that covers my “existing condition” with minimal fuss, it’s certainly beat my current company HANDS DOWN on customer service and, I kind of suspect it’ll do better on the price too.  We shall see…

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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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A bit of give and take and give (to Children in Need)

Um… so, it’s 02:29 and I’m posting on here.  I suppose I ought to explain.

I went to the Stroke Clinic this morning.  I got there for 9am, waited til 10am, was out by 11.30.  I was meeting a friend for lunch at 1, so I walked to the venue and then mooched in the shop nearby to kill the time.  Then had lunch with my friend which was completely lovely. Came home in time to be here at 3.45 for a drop-off of another box of Clexane by the kind lady from the Cadiss trial (most people don’t get through one box; this is my fourth).  Then horrible headache = paracetamol + darkness + sleep required.

I just woke up, 5 minutes ago.

Have only just sent thank you text for lunch. Have only half written up the answers to the questions from the clinic (will post them tomorrow –  or actually later today). Missed the whole of Children in Need, which I wanted to watch this year.

So… It seems if I take a day, I still pay for it with a huge chunk of time.   Only this time it was immediate paypack.  The headaches are horrible, but is it worth it to have a day out?  Seven hours out of the house in return for the crashing headache that requires seven hours to sleep it off?  Um. Yes.  Actually, I think it is, right now.  I couldn’t do it every day, but once, perhaps twice a week… perfectly manageable…

On the bright side, I just got 7 consecutive hours sleep, which rarely happens!!! And I got clearance on Tylenol PM today.  So I wonder, if I have one of those, if I can sneak in another 5 hours or so before it’s up time…?!! It worth a shot!

Note: If you missed Children In Need too, you can still donate via link above: just one example of it changing lives is here on WordPress.

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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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Hair brushes and war zones

My hairbrush is suddenly full of hair so I googled, and hair loss is a potential side effect of heparin and warfarin.

Not all of it, but about 20% of it.  I’ve got a lot of hair.  It’s not like anyone else will notice (I’m thinking of you, Wendy) but I don’t like it.

If it keeps happening, particularly if the RNI doesn’t stay stable on these drugs, I might consider switching.  It was a consideration for next year anyway so I might just bring it forward.  But I’m on a drug trial called Cadiss, which I remember I forgot to mention.

Apparently there are two drug routes that can be taken post-vertebral-dissection-stroke.  After the initial blast of IV drugs, you either go the aspirin or warfarin route for 6 months or so.  Noone knows which is more effective in the long term: aspirin is safer but is it as effective, warfarin may or may not be more effective but it has more side effects.

The Cadiss trial (see details here: CADISS) randomizes each person into either the aspirin or warfarin route.  You and your medics know which one you are on, but the trial does not, not until the end of the study.  If I hadn’t done the trial, my postcode (I think its that) meant that I’d go the warfarin route.  I was randomized into the warfarin route, so I’m getting the same thing, but the trial gets the data, which seems to be a good thing to do.  But… there are reasons to switch and I’m not adverse to doing that at some point, and may even ask for it, if it seems like the right thing for me at the time.

I just read the first paragraph again and that reminds me that they don’t seem to tell you about the drugs.  I thought they always went through side effects and stuff but it seems like if you’ve been inside they don’t bother.  So the doctor who didn’t call me back yesterday because its not his normal job says “has anyone talked to you about this, how if x or y or z happens you should come straight in?”…. Um… no….

On a completely different note, one of my best friends leaves the UK today to go back to some farflung warzone.  Stay safe trouble. xx

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