Just finished a letter to my new cardio consultant, partly because with 20-20 hindsight, my heart problems may well go back to the seventies, and partly because my GPs since 1984 have been fuckwits, as you’ll see, and I have no confidence that their records will reflect anything even approximating the truth. As, of course, I already know my hospital records don’t. There’s also the problem of one of the tests I think he has in mind being quite high risk, as I’ve mentioned previously (22% risk of stroke).
This is the letter (sorry folks but it is, of necessity, a bit long):-
January 24 2012
Dear Dr. Nxxxxx,
I’m pretty sure that the last thing you want from me is a long letter but I feel, in my own interests, I should make you aware of at least the pertinent part of my medical history as, from what I’ve seen of my hospital records, they’re pretty abysmal and, as you’ll see, I have no reason to suppose those of my various Wirral GPs, over the years, are any better.
* * * * *
Before I do so, though, there is something I want to be upfront about. I do regret this, but I’m afraid I have to decline the proposed double-cath angiogram as I feel that the risks, especially if you are going into the left ventricle from the aorta, are too great. (1) Even if not, the procedure is not without risk, and there remains the fact that I have a pathological fear of needles – it takes all my self-control to give a blood sample – and the prospect of another angiogram fills me with horror, as did the last one. I feel very strongly that the stress would result in the procedure doing me far more harm than good.
There is also the problem that I’m in far too much pain to be able to lie still – I haven’t even been able to lie down at all for a year, as it causes a great deal of chest pain and impairs my breathing – even in APH last year, I had to sleep sitting upright in a chair, and a year on things have improved only marginally. I’m sorry, too, that this isn’t negotiable. If my life depended upon it it’s possible I would feel differently, but I have my doubts.
* * * * *
I have no idea if my medical records will reflect it – I sincerely doubt it – but I have had heart problems as a matter of record since at least 1986, and quite possibly, though unrecorded, a decade longer.
In 1986 I was hauled off the hills of the Peak District and taken to Stockport Infirmary with a suspected coronary. After an ECG, several blood tests and a long wait – I was there much of the day – I was told that what I had experienced was oxygen-deficiency angina. (2)
I had experienced similar but less severe events perhaps half a dozen times over the previous decade,** but had put it down to my respiratory problems (I’ve had bronchiectasis and asthma since age two, when almost simultaneous measles and whooping cough trashed my lungs), my knowledge of heart disease in the seventies being effectively zero, I never even suspected angina. I have since remedied that deficiency.
**Always triggered by the same hill (I would go to considerable lengths to avoid hills, but sometimes you simply can’t), Hollins Cross, the pass between Edale and Castleton, in the Peak District – a footpath as close to vertical as it’s possible to be and not actually require climbing skills – a serious, 800-foot, challenge for me, with a 45lb pack. It was a very rare event to reach the top without either getting chest pain, or severe shortness of breath and vomiting, or all three.
In 1978, camped in Edale village after another crossing of Hollins Cross, I woke the next day with severe, radiating, left-centre chest pain. In my 30s at the time, heart problems never even occurred to me but, instead of continuing the trip, we opted for a lazy day and just mooched around on the local train, doing nothing very much and, slowly, the pain faded away. With that wonderful thing, 20-20 hindsight, I strongly suspect, and have done for some time, that this was the first bout of angina that I can be sure of.
Anyway, back to Stockport Infirmary, where I was given a letter for my GP (Dr. Brace, at Devaney Medical Centre, at the time), told to see her as a matter of urgency, and sent home.
I did as I was told, only for Dr. Brace to dismiss the whole episode as rubbish, even though, as you can see from the footnote, oxygen-deficiency angina was known as long ago as 1956. Grudgingly, she did agree to an ECG after surgery but, while I was still wired up to the machine, she put her coat on and went home, leaving it to a passing nurse, who hadn’t even known I was there, to unhitch me. As far as I know the ECG went in the bin – it was never referred to again.
As things panned out, the condition that was ultimately diagnosed as ME put an end to my outdoors activities by Autumn 1986, but angina continued to recur, especially when I was stressed (which was a lot – I had not only my own rapidly-worsening health to contend with, my wife had extremely severe mental health problems – I spent the 5 years we were married effectively on 24/7 suicide watch – a real risk as she’d been thwarted in two previous attempts, and I lost count of the number of times I talked her down from a suicidal peak), but Dr. Brace and her colleagues refused to listen to me (one doctor did, the senior partner, Dr. Jones, who prescribed a GTN spray, supplies of which dried up when he retired).
At that time, Drs. Campling, Brace, and Onion, all at Devaney, began a 10-year campaign to convince me and anyone who would listen that I was not ill, was, in fact, a malingerer, lying to claim benefits (though Campling signed me off as permanently unfit for work without being asked), or I was mentally ill (in late 1986, the DSS doctor had no hesitation in sanctioning my DLA claim (actually, Mobility Allowance then), after a rigorous examination that put me in bed for days). I did, eventually, succumb to mental illness – they drove me into a breakdown and directly caused the end of my marriage. But, of course, I wasn’t having a breakdown. according to those three doctors, I was just upset because my wife had left me! “Upset” doesn’t cause visual and auditory hallucinations, potentially suicidal depression, and massive weight loss.
I still suffer from bouts of severe, but mostly mercifully brief, depression, which goes untreated – I won’t take tricyclics, as they shut my brain down, and that’s one of the few things I have left in full working order, and SSRIs make me cough so violently my lungs bleed.
Eventually, Dr. Onion moved on, and in 1995 I quickly saw his successor, Dr. Bates (or he might have been Dr. Jones’ successor, I’m not sure), before the others could taint his perception of me. He referred me to the ME clinic at the RLUH, where I was speedily diagnosed with ME, enrolled in their research programme, and told that had I been taken seriously a decade earlier, I might have been cured. As it was, after 10 years neglect, there wasn’t a hope in hell.
In 1996 I was admitted to APH with a suspected coronary.
I was there for 2 weeks, watching all the other suspected coronaries being taken off for echocardiograms – all except me. After two weeks, the consultant told me I’d had angina, and I was discharged (it wasn’t angina, it was far worse, but if it had been, why was I kept there for 2 weeks?). It took me over six months to recover from that alleged angina, which strongly suggests it was actually a coronary (enzyme tests can, and do, throw up false negatives), and in January last year an ECG while I was in APH with pneumonia and empyema, and of which I have a copy, revealed damage to my heart that can only have come from the 1996 event.
Also while I was in APH at that time, I was diagnosed with severe heart failure. It wasn’t recorded. I also had a long talk with a pharmacist who tried to persuade me to try a beta-blocker that “might be safe”, after I’d pointed out that with my asthma, they were contra-indicated. Later I was told Digitalis had been prescribed. It never reached me and none of that was recorded either – I have my complete and unredacted records for that period, obtained under an FoI request. They are mostly a work of fiction and, other than the significant ECG contain nothing useful at all.
Another event which you won’t find on my records took place on my second day, that could conceivably have killed me. My lungs were so full of fluid I could hardly breathe, and, faced with blank looks from some very young doctors, I suggested Furosemide, expecting, given my condition, an i-v. I got tablets – better than nothing but only just. However, while I was half asleep that night, some lunatic plugged me into 2 litres of i-v saline. I woke up with my breathing even more severely impaired from the 300ml that had already gone in, and made them disconnect it immediately. Had I stayed asleep, and received the full 2 litres, I have little doubt that I might well have died, and I sincerely doubt that gross stupidity would have gone on my death certificate.
On discharge, being unable to get to the surgery, I wrote to Dr. Nuttal asking him to pursue the question of heart failure. After two months and two more increasingly angry letters, Dr. Nuttall arrived at my home unannounced, examined me, admitted that I had what sounded as if it could be heart failure (at that time my legs were massively swollen from my toes to above the knee, something which has begun to diminish only recently as I made a unilateral decision – Dr. Nuttall, after that one visit, hasn’t returned, though he’s in the building several times a week (I live in a supported flat), and I still can’t get to the surgery – and increased my Furosemide by adding to the 80mg in the morning another 40mg in the afternoon.
Some weeks after Dr. Nuttall’s visit I got an appointment at St. Cath’s with Dr. Abdelmouti (and I’m sorry, but a GP with a “special interest in cardiology” is no substitute for the consultant cardiologist I needed). Dr. Abdelmouti, before even examining me, subjected me a 15-minute harangue on all the reasons why, in her view, I couldn’t possibly have heart failure, yet within seconds of eventually deigning to listen to my heart she was frantically rummaging for a form to arrange an urgent echocardiogram.
After the echo, which took place a week later, she again went into her “you can’t have heart failure because I say so” routine, while admitting that she hadn’t the slightest idea why, were that the case, I had all the symptoms of heart failure, nor could she explain why I deteriorated if I stopped my heart failure meds – yet if it walks like a duck, quacks like a duck, and looks like a duck, it’s a damn duck. You don’t jump through hoops, as Dr. Abdelmouti did, trying to prove it’s a hamster! Oh, and Dr. Abdelmouti let slip that she’d been told I had self-diagnosed heart failure – that can only have come from one source, and I know who, and it’s a lie. It is, though, par for the course for every referral to come out of Devaney since the mid eighties, every one of which has gone belly up.
Of course, what the echo showed was aortic valve calcification, and the literature is quite clear that, asymptomatic, it’s a minor problem, but with the symptom’s which I had, and still have, my life expectancy is rather less than wonderful – the 2 year survival rate being 50%.
There are still a few things that baffle me. Before I was admitted to APH last January, I was, in fact, very well (for me, anyway), and felt better than I had in years – yet I came out of there a virtual basket case, barely able to walk round my flat most days, with zero energy and hugely swollen legs, since when little or nothing has changed.
Oh, and for the record, Dr. Newall, other than at the chest clinics, you are the only consultant at APH who has taken me even remotely seriously in 27 years. Since I moved here from Bootle in 1984, my health care has been somewhere between indifferent and positively dangerous. Even Dr. Silas, after my “angina attack” refused to accept I had COPD, even though the early stages of emphysema had been identified at least a year or two earlier, and that record should have been in my file.
So concerned was I by the fact that nobody took me seriously**, on one occasion, I paid my £10 to get access to my records, as I was convinced that I’d been labelled a hypochondriac at some point. I found nothing, of course, which meant nothing either as anything that might “upset” the patient was allowed to be removed, rendering the whole process futile. And yes, I do realise how paranoid this sounds to someone who doesn’t actually know me.
**A few years ago, I was referred to ophthalmology at APH. There I was told that the vitreous fluid in my eyes was hardening and fissuring, tearing my retinas as it did so. When I asked the consultant what could be done, he said – and bear in mind I was in a wheelchair – “Avoid bungee jumping!”
That episode sums up perfectly the disgraceful standard of care I’ve received at APH to date.
Ronald W. Graves.
PS. On the day I saw you at APH, I was sent off to the Path Lab to collect the bottle for my urine sample. I explained that this was further than I could safely walk (I was already exhausted simply from going to the adjacent room for my ECG and spirometry, the latter contributing largely to my exhaustion). I might as well have saved my breath, and I was left with no alternative but to walk to the Lab (that or forego the test).
Since then I have suffered a serious relapse, my breathing is worse than ever (I suffered acute left side chest pain during spirometry, after a bout of coughing violent even by my standards; it took several days to abate), I feel profoundly weak, and I have no idea at all when I shall be able to return the bottle of urine (currently in my fridge where, as the temperature is 2C, it should be safe), as the walk even to my front door, for a taxi, is beyond me right now – walking from the entrance of APH to the Path Lab, and back, of course, would be quite impossible, as is using my chair (it takes less effort, but I still need to breath better than I currently can).
Sorry to moan, but I needed to explain why I still haven’t returned the urine bottle. And why It’s possible I might have the same problem with the 24-hour heart monitor – my life is utterly unpredictable in terms of how much (or, in reality, how little), I’ll be able to do on any given day.
(1) American Heart Journal
Volume 148, Issue 1 , Pages 41-42, July 2004 Should we cross the valve: the risk of retrograde catheterization of the left ventricle in patients with aortic stenosis Trip J Meine, MD, J.Kevin Harrison, MD
(2) This is just a reference point to indicate that the condition, by 1986, should have been sufficiently well known to have reached my GP. Dia Med. 1956 Sep 20;28(68):2074-9.
[Oxygen deficiency as the cause of pain in angina pectoris and myocardial infarct; technic and determination of oxygen therapy].
[Article in Spanish]
PMID: 13375393 [PubMed - OLDMEDLINE]
And that’s where things are for now.
The consultant, currently on holiday, has some tests planned, though
I’m not convinced they will accomplish anything much.
His theory that there might be a hole in my heart, albeit a small one, does hold water, as my breathing has always been far worse than spirometry suggests it should be, the more so as I’ve got older – a hole would explain that (though if it’s big enough to affect me, I’d have expected it to show on the echocardiogram – maybe it did and no-one told me – after all, the same doctor who reviewed that argued that I didn’t have heart failure! At my age, I’m not interested in major surgery to repair it, if it is there – I wouldn’t live any longer as a result. In fact, given the state of my health, I doubt surgery would be offered.
They could replace the damaged aortic valve, I suppose, and that can be done via keyhole surgery, but that’s expensive, and major surgery – getting both hands in and rummaging around – is cheaper. Recovery, of course, is very much more expensive, but accountants are notoriously short-sighted. Both are high-risk, and there’s a question of whether I’d survive either version in my weakened state. All things considered, I’d rather have one crappy year – or longer maybe – than a few short and futilely pain-filled weeks. Or nothing, if it all goes pear-shaped.
I’ll go along with whatever tests he has in mind – as long as they’re not invasive, and as long as I’m able to. At the moment, there’s half a gallon of pee in my fridge (24 hours worth, for a cancer test). I have no idea when, or even if, I can take it back to the hospital. I think if he wants to do it again, he’ll have to admit me to the day ward for 24 hours.
So far he’s arranged for a 24-hour heart monitor in 3 weeks – not much sense of urgency and I could do without the £30+ taxi fare. But the same problems obtain as with the bottle of pee – I can’t be sure of getting it back the following day, always assuming I can get there in the first place. It’s one thing getting a taxi to the pub – quite another to be faced with a quarter-mile walk at the hospital, which is the reason I’m a basket-case now.
He wants a CT scan at some point, too, which will show almost as much detail of my heart as an angiogram. An MRI scan, of course, is the gold standard, but treated here as if the machine actually is solid gold and they’re frightened of wearing it out.
But, whatever happens, there’s no getting away from the fact that the 2-year survival rate for my heart problems is 50%. I’m in my second year (as far as I know – nobody has yet explained why I went into hospital, last January, perfectly fit by my standards, yet came out a complete wreck), so there’s an even chance there won’t be a third.
We’ll have to wait and see.