Chronicles of the Heart, Part 38 – Cardiology fubar…

Yes, boys and girls, there was a cock-up after all… And my feeling that this was a doctor who really wasn’t paying attention has been amply born out.

Example – I wear a fishing vest when using my manual chair – these are cut short, so they don’t snag on the wheels, making them ideal. Mine is made by the Ron Thompson company – the name is embroidered on the front and, in my view, clearly a logo. The consultant, displaying the fact that he was as sharp as a banana, asked if that was my middle name!

I have another fishing vest with the maker’s name on a pocket flap – would this stupid bugger have asked me, had I worn that one, if my name was really Crazy River?

Someone else asked me if the anti-tip wheels were to aid me in going backwards (how, ffs?) – this in a bloody hospital, where you’d expect wheelchairs to be commonplace!

I said last time that he’d prescribed a beta-blocker. Turns out he hadn’t, when I finally deciphered the scrawl on my copy of the fax to my GP.

So I chased it up via my contact at APH, who subsequently forwarded to me a copy of the consultant’s email to her (while I was out yesterday), which, like my records of my stay in APH last year coincides only tangentially with reality.

Frankly, this hospital beggars belief – they seem to be able to get NOTHING right.

When it comes to medication, I pay very close attention to what’s being offered and the potential harm versus benefits ration. Thus we had a detailed discussion of beta-blockers. I was initially sceptical, as I explained in my previous post, and I was assured it would be safe, so I agreed to try it. This, though, is his conclusion, as per his email (my comments in bold):-

“I explained to him that Nebevilol, a relatively new beta-blocker is well tolerated by people who have documented reversible bronchial obstruction..

He, in fact, tried to tell me that my bronchial obstruction was not reversible. I told him it was – not a lot, but definitely reversible –   which made Nebevilol somewhat of a risk. We kicked it around during which he tried to tell me there was no record that I had COPD, and I eventually agreed to try it.

However, I have since checked the drug’s entry in the British National Formulary (the prescription-drug bible), and it is NOT safe for me. It is a little safer than other beta-blockers, that’s all. So, his omission might well have been fortuitous and, if it turns out I do get them anyway, I’ll be monitoring my response very carefully

He was unkeen on continuing on Losartan as 25mg makes him ill and 12.5mg is difficult to source ( tables of 25mg are so small that he finds it difficult to break).

It is true the 25mg makes me very ill (my legs, from knee to ankle are covered in a blistered red rash which was caused by Candesartan but which 50 and then 25mg Losartan has made very much worse. In addition, the urge to sleep with Losartan is uncontrollable, and it causes a persistent cough – the last thing I bloody need!

I told my GP this – he still prescribed 25mg with the instruction that I should cut them in half if I didn’t like it – they are tiny oval tablets, almost impossible seat properly in the tablet splitter and getting an accurate dose that way is impossible (and the official line is that only the 50mg size should be split, and it’s scored to aid that.

12.5 mg tabs are widely available – I told him that my GP wouldn’t prescribe them, which is true  (because he’s an obdurate bugger who, if I tell him what I need, will ALWAYS prescribe something different) – at no point did I suggest that they are hard to source, because they are not.

The choices were

1) He goes on nebivilol (Note that he can’t even spell this consistently – a dangerous trait)

2) He tries Diltiazem

3) He takes Digoxin, which will slow his heart rate but not help his High BP and is not very useful when he has sinus rhythm and no documented evidence of significant left ventricular dysfunction.

Bullshit!  Sorry, but it is. He said that Diltiazem slows my heart (not in my experience – Update, August 1:- It still doesn’t have any significant, reliably measurable, effect on my heart rate), and as Digoxin does too (just seconds after telling me that Digoxin is “just like caffeine” which means it speeds up my heart, not slows it), he wouldn’t prescribe that with Diltiazem. The question of left ventricular dysfunction never arose. And what he says might not be true anyway – it hasn’t been investigated – that needs one of the tests I refused – the one with a 24% risk of stroke. No point in finding out exactly what’s wrong with my heart if I’m a goddamned vegetable. Or dead.  He did agree, though, that Digoxin would improve the action of my heart – which is what I want.

He chose to have Diltiazem and I gave a GP note for SDiltiazem MR 180mg once a day. He asked if he could take it twice a day, which I agreed and indicated that his GP could make it twice a day if he still had high BP and fast heart rate despite 180mg once a day.

Again, not true. He mentioned Diltiazem (what SDiltiazem is I have no idea), and I said I’d taken it for years, until my GP told me that it was dangerous in heart failure, and stopped it (despite the fact that by then I’d already taken it for several months with no ill effects). He said he’d prescribe it once a day, but if I felt the need I could increase it to 2 a day, as before.

The words “indicated that his GP could make it twice a day if he still had high BP and fast heart rate despite 180mg once a day.” are a complete fiction. It was never mentioned.

I promptly emailed back pointing out that I’d agreed grudgingly to Nebivolol.

No reply.

And there, for now, matters rest.

Update August 1:- I now have the Digoxin, but initial research suggests that it conflicts with several of my existing meds. I need more details.

And it ends withFinally, he agreed to come for a folow-up(sic) with me in 6 months.”

In actual fact he told me he’d see me again in six months. “He agreed” implies there was some discussion – there was not.

And when I booked my appointment, I asked for one as late in the morning as possible. I got 11.15. Anything later? A very hostile “NO!”

Is 11.15 doable? No idea, it’s six months away. I might be dead by then, I’m certainly, based on the last six months, likely to be much worse then than I am now.

Would it have been doable on Thursday? Absolutely not – I started to get ready at 07.00, was ready to go by about 11.20 (and even then I’d cut corners), and got there at 11.5.0. To actually get there for 11.15 I’d have to be getting ready at about 06.00 – earlier unless I cut corners again – screw that. That’s the time of my first meds of the day, and I’m fit for nothing until they’re in my system. So what, exactly, has been the point of all my fucking correspondence, and all the aggravation, if they are still not prepared to accommodate me?

And here’s an odd thing. The idiot doctor, whose mind-bogglingly inept interpretation of my echocardiogram kicked off this whole farce, suddenly appeared on the clinic. Her name wasn’t on any of the boards (they changed the boards to the afternoon shift while I was still hanging around), and she’s not a consultant anyway. So – what was she doing there? Interfering in my case, perhaps? I have no idea. I do know that several of the clerical staff were actively hostile – I was clearly the rotten bugger who’d tried to drop poor Nick Newall in the shit.

And oh yes, I was given their response to my complaint while I was there.

Another daft episode – he was concerned that my heart rate was high despite my having hung around in the waiting room for hours. I pointed out that my BP and heart rate had been checked within minutes of my having wheeled halfway around the hospital. He wasn’t interested. He also seemed not to know that several of my meds cause tachycardia – my default state is tachy to a degree – just sitting here typing it’s 90bpm (something I had a problem with making staff understand when I was an inpatient – the lack of basic knowledge, and a seemingly universal tendency to ignore any input from the patient is, frankly, terrifying, especially in this consultant. I wonder how many people a year die at APH because of this overall tendency? (Note: I have made a small change for the sake of clarity – I don’t want anyone claiming that I’m saying this consultant is killing people – the comment applies to the hospital as a whole.)

And I’ll say it again, these useless bastards at Arrowe Park Hospital are going to kill me at this rate. If I let them – I don’t intend to.

To try to enhance my quality of life (which, right now, isn’t worth the candle), I’ve ordered my own supply of Digoxin, and fuck ’em if they don’t like it. I know the risks – like most drugs for heart disease, it’s pretty unpleasant/potentially dangerous, but faced with fuck-uppery on this scale, I really don’t see I have any alternative. And it’s cheap enough to be sustainable if it works (though in that case I shall be loudly insisting that it’s prescribed, as it should have been 18 months ago when, as an inpatient, I was told it had been, but like many other drugs that never reached the patients, that didn’t reach me.

So if the only other option is to sit here, day after day, until I die, and hardly ever get to go out (I don’t count going to the pub as a leisure activity, more sanity protection), then screw it, I’ll take the risk, because that is simply not acceptable when, in my view, with the right medication, it’s avoidable.

And if it turns out I’m wrong, and Digoxin doesn’t improve my quality of life in the way I believe it will, then it’s game over – I just don’t want to play any longer.

Especially since the supply of fuckwit doctors at APH seems endless, and the chances of my actually being prescribed the drugs I need appear to be zero.

Which, having rubbished one consultant it seems clear the current clown is going to do no more than go through the motions, and write fanciful reports high on bullshit and low on facts.


18 thoughts on “Chronicles of the Heart, Part 38 – Cardiology fubar…

  1. That’s unreal, what the hell is wrong with people the world is going to shit. Ron, don’t give up, you know what is best for you and are an informed intelligent man, hold them accountable put everything in writing, contact your mp, patient advocacy group etc. Will keep you in my thoughts

    • Thanks Bev!

      My MP, unfortunately, is Frank Field – I had a run-in with him some years ago – I’m not his favourite person. And I doubt the local advocacy group are as good as I am – they certainly have no more pull than I have – their purpose is to support and represent people who, for whatever reason, can’t do it for themselves. In all honesty, I can’t claim that.

      Ultimately, it comes down to my word against his – I know my version is the true one – I just can’t prove it, even though the guy is obviously an idiot. I suspect he’s not been in this country long either – his grasp of idiomatic English is non-existent – seriously bad news in an area where, if you went out and shot 10 people at random, the average IQ would go up a couple of points. I know how elitist that sounds – it’s still true – the illiteracy rate is one of the highest in the region, if not the country. At least it was when I was a tutor, I doubt it’s improved much.

      I can’t see what more I can do, short of going in there with a shotgun and demanding treatment at gunpoint!

      My Digoxin is on its way and, hopefully, I’ll get what I need from that. If not, then I have no ideas other than writing to the papers. I might as well – there’s nothing to lose.

  2. It’s definitely worth a try. The state of our country and it’s treatment of our citizens is appalling to say the least. What lies ahead for us all is terrifying, if I didn’t have a child, I wouldn’t bring one into the world as it looks right now or for the foreseeable future. The thought that this is 2012 and to see the wars going on, the treatment of one another and ultimately the total disregard for human life makes my head spin, it’s surreal. I do hope that all works out for you Ron and I’m sorry you have to fight for proper treatment, I know how exhausting that can be, it’s a good job you are intelligent and have the means and know-how to research.

    • The odd thing is, Bev, for the past few days I’ve felt better than I have since this whole farce started in January last year. Why? I have no idea, but I think I’ve quite probably been depressed and not known it.

      Or maybe it WAS just the fear that – despite what I’ve said on my blog – never really went away – I don’t mean that I was consciously afraid all the time, but on some level I clearly was. Until now, it seems, and likewise the depression, if that’s what it was (to be honest, it doesn’t feel like it’s been depression, but it’s been something). Whatever, maybe I just needed to admit to myself that I was scared, after a god-awful 18 months I seem to be back to normal, psychologically, at least.

      I’ll self-medicate with Digoxin and, if that works out, the hospital can sod off (though I’ll keep attending for the sake of my DLA – in case I ever have problems).

      One thing I’d forgotten. I was sitting by the appointments desk, and everybody who saw that doctor got an appointment for 6 months time, which strikes me as odd – I’d have expected some to be called back earlier, and some later, not all at the same time. Are we all the awkward sods, palmed off on this useless bugger?

  3. The 6 months turn around through my experience is standard unless something comes up in the meantime, I say this as any doctor or specialist I’ve seen/see tells me they will see me in 6 months unless I have any problems and I have a few of them.

    Do you not take any anti=depressants Ron, I would have thought that under your circumstances they would have you on something, like sertraline (sp) as it also helps with pain. Having a chronic illness and one that limits my mobility, chronic pain etc, is a constant battle to not fall into depression and I do take sertraline max dosage, I couldn’t deal without it to be honest.

    Getting older and closer to the end is frightening for all of us in many ways, the not knowing to me is the scariest and on top of that is who will care for my daughter. It sounds selfish, I may anger some but I’ve prayed that we both go together if things don’t change. I’m doing all I can at the moment to get her to learn life skills to her best ability, but I know the services and support, safety etc, is not there right now and to be honest that terrifies me.

    Whatever the reason Ron, it’s good that you are feeling better hopefully we’ll have a bit of sunshine for a while, that’ll make us feel even better 🙂 xx

    • I can’t take SSRIs – they make me cough til my lungs haemorrhage (didn’t used to before COPD set in – I took Sertraline (as Lustral), in the early 90s), and I won’t take tricyclics – except for a low dose of Amitryptiline, for pain, to help me sleep – at the psychotherapeutic level they shut my brain down and I can’t allow that – it’s one of the few things that still works properly. And – Sod’s Law – I’m one of the 1% of patients for whom tricyclics are addictive – Lustral was to wean me off them.

      And to be honest, I really don’t want any more drugs – 16 is enough. 17 with Digoxin.

      Apart from my COPD, this is what’s screwed me up

      Still, I’ve had a pretty good day – made a batch of black pudding (Spanish Morcilla de Burgos), which normally takes two days – so, I’m impressed.

      Tomorrow morning we’re supposed to have a couple of dry hours, so I’ll get up early and be ready to take my camera to the lake, which – entirely by coincidence – has a nearby pub in case it rains! As long as that’s after midday . . .

  4. Hi Ron. a matter of interest…Age UK are wanting people to write in with their experiences of the NHS and whats happening to them in all this political/medical upheaval. they are campaigning again. might be worth a thought and putting in your 2 pennyworth? (or more)

    • Thanks – I’ll have a look at that – though I do wonder, from my perspective, how it can possibly get worse if Arrowe Park were to be sold off.

      • only way it could from what ive read in your blogs is that you not only end up with shit treatment as per but to add insult to injury have to pay for it.

          • lol. well thats one way of putting it i guess. when you pay for a service you have more rights. having said that im sure one of our taxi firms is being nasty to me in rarely having a car to come for me. they say it costs too much and petrols gone up./ think they bin asleep lately cos its down by about 9p per litre in last few weeks around here.but when one woman is on radio can rarely get a taxi from them if the man is manning it…no prob.they are all white drivers and cheapest least 2 other taxi firms who are about 3-5 miles away ,,,one all white drivers ,the other mixed.wanted to charge me £5 to go less than a mile to my drs. going rates £3 i feel im being penalised for living where i am. have written to my MP to find out if there is any regulation on prices private hire cabs can charge and if not why not and could it be given to cameron to get legislation etc passed. its right up his street.,lol.

            • Taxi tariffs are negotiated at local level, between all the taxi companies and councils – but there are always dishonest drivers. Rates should be the same whatever company you use, but drivers have the option (except for hacks which are metered), to charge less than the tariff rate if they wish.

              For example, it’s exactly £6 to the pub, most drivers charge £5.80 – £5.60, and some charge a fiver. I pay £7, (15% tip), whether they charge £5 or get ambitious and charge over £6. They soon get the message that if they overcharge they don’t actually make any more.

              A couple of years ago I found our local taxi tariff online – not managed it since though.

              • some years ago there were regulations i believe, the local taxi licensing office dealt with complaints. wouldnt be for hackneys locally. not seen any around here. they all seem to be and have been over the 15years i have lived here, private hire. but they dont deal with it now.

                  • have already been in touch with our local council and i assume it would be a local office somewhere that deals with local taxi firms.they say there is nothing in our area. also rang local taxi licensing office. same thing there. hence contacting local MP. shes pretty good usually.

  5. Sad to say, but we have a lot of the same health problems I could tick off most of them. I think I’ve read about the SSRIs affect on you before but Fibro has stolen my brain so please forgive me for any repetitions. I understand the not wanting to add any more pills, every time I try and get rid of one I end up with two more. I thought 15 at one time was a lot, you’ve got me beat. Hope you have another good day tomorrow and get to go out and spend some time taking picture. Looking forward to you posting some of the beauty you capture on your morning out also. Night.

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