This is the latest instalment in my saga. I was promised a referral to a consultant cardiologist but, as you can see below, that’s been downgraded to “a cardiology team member”. The office boy, perhaps?
I have decided to make a change to my recording of this farce. In the past, names had been withheld. Now, I feel that I have nothing to lose by revealing the names of those who, by acts of omission or commission, are fucking up my life, quite possibly unto death.
An exaggeration? I don’t know, but here’s the thing, nobody else does either and, as far as I can tell, no bugger cares.
There does seem to be a concerted campaign to prevent me from seeing a consultant cardiologist, and I would love to know why. I’m not thrilled, either, to be referred back to Arrowe Park Hospital, the home of the witless cretins who fucked up my medical records, and me, in January. So staggeringly inefficient were they that, on my discharge letter they got my gender wrong. So, here’s a thought – how much of what’s missing from my records is on some woman’s records instead?
The consultant under whose care I was at APH was Dr. W. Leong. In his defence, until I raised the matter of prescribed drugs not reaching me, he had no idea how badly run Ward 32 was. Again, that was described earlier in “Hell is Arrowe Park Hospital“. There was, as far as I could see, no indication that the problem on the ward was going to be investigated and/or fixed.
And am I seriously expected to believe that I will get an unbiased assessment at APH, and that they won’t do as the last doctor did and just go into this with preconceived ideas, rather than open minds?
That was Dr, Abdelmouti, the “GP with a special interest in cardiology” that I was saddled with, who knew less about my heart-failure drug than I did** and who, having apparently decided I couldn’t possibly have heart failure before even examining me, after the echocardiogram was convinced that she had been “proved” right.
**That’s OK, GPs don’t know everything, I don’t expect them to***, and I’d made a point of finding out. However a doctor who dismisses information just because s/he, personally, isn’t aware of it, and who then argues a contrary position based on that ignorance, is potentially dangerous.
***A GP who is in a consultant’s position really DOES have to know everything relevant to the patient, or they might as well pack up and go home.
I disagree about heart failure. I had to stop taking Candesartan, a drug specifically for heart failure, because of the severity of the side-effects, after which I deteriorated considerably. If a heart-failure drug improves my condition (especially fluid retention), and I deteriorate without it, it seems to me pretty good odds that I do, in fact, have heart failure.
Dr. Abdelmouti, too, having dismissed heart failure, refused to ascribe my symptoms** to the aortic valve calcification revealed by the echocardiogram (I’ve discussed the prognosis indicated by the symptoms previously – it’s not good), saying that they must have another cause. However, when pressed she had not the slightest idea what that other cause might be, as it was outside her apparently limited knowledge. But, if it looks like a duck, walks like a duck, and quacks like a duck – it’s a fucking duck, for Christ’s sake!
**Heart failure and aortic valve calcification/stenosis have symptoms in common, and AVC can cause heart failure. Stenosis – narrowing – is an inevitable consequence of AVC.
So, once again I find myself writing an angry letter to my GP, Dr. Nuttall at Devaney Medical Centre, Oxton, Wirral. He ignored me for 2 months, earlier this year, after I told him I’d been diagnosed with heart failure in APH. In his defence this was NOT recorded in my records by the incompetent oafs who carried out the ECG (along with much else that was either omitted or just wrong). Nevertheless, if a patient claims he was told he has heart failure, don’t you feel a GP should look into it rather more deeply than just checking the computerised records, and actually talk to the patient about it? Because I bloody do. Yet I had to write a second, very long, very angry, letter, before Dr. Nuttall, pitched up, unannounced at my door, two months late.
And, while I have been trying to avoid it, I have come to the conclusion that I do need legal advice, before legal aid vanishes into oblivion and before I die.
Am I dying? I don’t bloody know (but right now, I’ve been awake for 4.5 hours and I’m battling to keep my eyes open). If my symptoms are caused by aortic valve calcification, with or without heart failure, then yes, I am, there can be no doubt about that at all. What I need, very badly, is a consultant cardiologist to investigate and tell me the truth of the matter. Another two months is far too long to be left in the dark.
I suppose it’s hard for many people to understand, but if I know I’m dying I can deal with it – it’s my working assumption anyway (on the basis that if I’m wrong things can only get better!). What I can’t deal with is not knowing – that’s just wearing me out mentally
So this is my letter:-
Devaney Medical Centre
July 24 2011
Dear Dr. Nuttall,
Just a note to thank you for referring me to Dr. Hornung, particularly as I am continuing to deteriorate. It really is greatly appreciated. (I had thought I’d sent an earlier, briefer, version of this letter some weeks ago, but it appears I didn’t; I have been so ill that it’s hard to keep on top of things that need doing.)
However, I now have an appointment and, unfortunately, there is no indication that it’s with Dr. Hornung, just “a cardiology team member” at APH – on September 26.
They don’t exactly have a profound – or even any – sense of urgency, either, as this will be 8 months since I first wrote to you about this problem. If I don’t see Dr, Hornung – or another consultant – I may well wind up no better off than I am now, especially as APH, in whom I have no confidence at all, screwed up this whole affair in the first place.
Am I dying? I don’t know. If my symptoms are caused by my aortic valve calcification/stenosis, then yes, I am. There’s a body of literature that will support this view, as I’ve already pointed out. What I need, very badly, is a consultant cardiologist who is able to tell me the truth of the matter. Why is that so difficult to achieve? Or, apparently, so hard for the clowns at APH to understand? And do I actually have two months to spare until this appointment comes around? If I am dying, that’s a sizeable chunk of my life expectancy. If I’m not, then it’s an unacceptable length of time to be left worrying.
If I am dying, I can deal with that, and I have a right to know so that I can plan whatever time is left to me accordingly. Likewise, if I’m not dying I also have a right to know. What I cannot deal with is the constant uncertainty; it’s wearing me down mentally. I need to know, one way or the other.
I feel extremely strongly that, if I’m not actually seeing Dr. Hornung, then it is likely to be as much a waste of everybody’s time and money as Dr. Abdelmouti was. Her refusal even to consider that my symptoms are caused by the aortic valve calcification/stenosis, and to ascribe them to some mysterious, as yet undiagnosed, condition is perverse. If it looks like a duck, walks like a duck, and quacks like a duck – then it’s a duck. There is no need to try to prove it’s a goose.
I know I keep bringing this up, but it deserves an answer which, so far, hasn’t been forthcoming – I was perfectly well (by my pretty low standards – in fact, I felt better than I had in years), the day before I was hauled off to APH on January 20, and pretty much a basket case when I emerged 4 days later, since when I have improved not one iota. That, to date, remains unaddressed.
What changed during those 4 days, when I was told I had heart failure, which fact nobody bothered to record? What were the computerised diagnostics about? ECG machines aren’t noted for their vivid imaginations so presumably it detected abnormalities. Why does nobody but me care about that?
APH have fouled up in so many ways, I am deeply reluctant to give them the opportunity to do so again. The heart failure wasn’t recorded – very little was, and what was, was often wrong or, simply, lies. In addition, while I was trying to sleep on the second night, and despite the fact that I was taking Furosemide to try and reduce the fluid in my lungs, some lunatic plugged me into 2 litres of saline – by the time I realised what was going on, I could barely breathe enough to insist they disconnect it, never mind ask what the hell they thought they were doing. That, too, wasn’t recorded.
And why, for pity’s sake, is it so hard to get to see a consultant? I’m beginning to feel that I’m actively being prevented from doing so.
Back to the present, as I said, I’m continuing to deteriorate, and this, at least in part (possibly a large part), is the result of my having had to discontinue the Candesartan, because of the side effects, several weeks ago, since when, having lost its diuretic properties which greatly enhanced those of Furosemide, I am once more waterlogged. Within a week of stopping it I had regained a stone in weight, which I can only assume is fluid and, looking at my legs and feet, there’s really no doubt. I have thought of buying broader shoes/boots, as no footwear I have fits any longer, and forcing my feet into my usual boots when I have to go out is agonisingly painful and, for all I know, damaging. However, as my feet have increased in size in all dimensions, I doubt simply broader will be adequate. Most days I wear only socks, and getting them or off on can be a challenge.
After taking both Candesartan and Furosemide for some weeks, my weight was down to 13st 5lb from over 15st, weight I had been unable to shift by normal means for over a decade, and I can only assume that I had been waterlogged for quite some time (not a medical term, but appropriate, I think, given the amount of fluid I’ve shed, and now regained). My weight currently fluctuates between 14st 3lb and 14st 8lb, some of it apparently fluid.
The Candesartan caused serious and persistent catarrh, which impaired my breathing, something that has plagued me for most of my life before moving to Wirral in 1984, when it quickly disappeared, and having it back simply wasn’t acceptable on any level. Perhaps more seriously, it caused my tongue and throat to swell, the former making it impossible to eat without biting my tongue. It would also get very badly bitten in my sleep, forcing me to sleep without dentures (my tongue has yet to return to normal). While the swelling of my throat didn’t affect my breathing noticeably, it did make it very difficult to talk. When I could, my accent, mysteriously, was more New England than North-west England, at least to my ears.
I also suffered deeply unpleasant dizzy spells which usually happened when sitting at my computer, writing (I spend a lot of time there, not having the energy to do anything more demanding most of the time). I have a habit, when, say, stuck for a word, of closing my eyes for a few seconds and, on opening them again, I would frequently be completely disorientated, having no idea which way was up, and more than once fell off my chair as a result. There was intense nausea, too, which failed to respond to my usual remedies, ginger wine or crystallised ginger.
I have to say I find it impossible to reconcile my deterioration since stopping Candesartan, which is specifically for heart failure (and hypertension), and which, despite the unwanted side-effects was very effective, with Dr. Abdelmouti’s claim that I don’t have heart failure – the two would seem to be mutually exclusive. I have been tempted several times to revert to Candesartan, but despite the benefits the side-effects are intolerable – I accept that there is a trade off between benefits and adverse effects, but these were just too serious.
I am increasingly prone to bouts of acute breathlessness (mentioned previously but becoming increasingly frequent and often unprovoked), accompanied by a choking sensation high in my chest. This isn’t the normal COPD breathlessness (or asthma attacks – they are quite different). I can, in fact, actually breathe quite well during these “attacks” (by my standards, anyway), no wheezing or constriction at all – it’s just that breathing appears to benefit me very little at these times.
I’ve been feeling very ill of late. The problem is that I’m almost terminally exhausted, a problem which has been worsening for some years, and which has accelerated since January, even though I’m sleeping reasonably well (though still not in bed – something I’d sell my soul to be able to do). Much of the time I’m just too exhausted to get dressed and, if I manage it, there’s every chance that, at the end of the day, I’ll be too wiped out to get undressed.
I’ve had only a narrow window of activity for many years, but this is new – I don’t have a window at all. I’m permanently exhausted (right now, I’ve been awake for 4.5 hours and I’m battling to keep my eyes open – it’s absurd), and, if I force myself to go out for lunch once a week – to have even the most minuscule of social lives – it can take 4 hours to get ready – I have to keep stopping to rest – and I feel appallingly ill for days afterwards. And the tiredness doesn’t abate – it’s become a permanent feature. I am no less tired during the day whether I sleep well or, as happened a few nights ago, I can’t sleep at all, and wind up wide awake all night, writing for my blog for most of the night, just to pass the time.
And, six months down the line, almost to the day, the feeling that nobody is taking this matter seriously has become unavoidable, and I have little doubt that APH will close ranks and pronounce me well – whether I am or not.
Paranoid? Cynical? Maybe. Justified? Absolutely, after being ignored for two months, then referred to a clueless GP (rather than a consultant cardiologist), who had been given the impression that I had self-diagnosed heart failure and who therefore set out to “prove” that I didn’t have it,** and to be now sent back to APH but quite possibly NOT to a consultant, again, I think a degree of cynicism, even paranoia, is more than justified.
As is an intense desire to seek legal advice to resolve this farce before it kills me. It does seem to be my only hope of making any sort of progress.
Ronald W Graves.
**And despite St. Cath’s asking me if I would like copies of Dr. Abdelmouti’s correspondence with you, I have had nothing. I shall be following that up.
St. Cath’s, by the way, is St. Catherine’s Hospital, Birkenhead.