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.
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 with “Finally, 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.