I thought this might be a good time to describe the level of health care I’m conspicuously not getting, for a life-threatening condition. And that’s the important bit – sorry about all you people waiting months, but we know I’m dying, you’re probably not.
Average life span for my condition after diagnosis, is 2 years, or the 2-year survival rate is 50%, depending on which research paper you favour – either way, I’m into my second year and I’m screwed, as after the second year the odds against the further survival of the 50% must be getting pretty damn short . Always assuming I make it that far, which is by no means certain.
I’ve been writing this over several days (4 days to write just over 2,200 words is totally absurd – that’s an hour’s work on a good day, and two at most), and, because I’m peeing every 10 minutes – seriously, my Furosemide has gone into overdrive this week – it keeps getting left, and I get distracted by writing something else that’s more time-sensitive, then I’m tired cos of all the walking back and forth… So if the chronology is a bit off – and I’ve done my best to sort it out – that’s why.
It’s now one month and five days since I wrote this letter to my cardiologist (and January since I saw him last), since when I have heard not a word.
In it I pointed out that, among very much else, I was going downhill so fast I needed skis; indeed, I have had to radically scale back what minimal level of activity I have been able to indulge in.
Luxuries, like the wildly exciting shopping for food, I’ve been doing mostly online for some months now, because carrying the stuff in from the car park was killing me – and not metaphorically either. I could do my shopping using my powerchair, but in this building, it’s so designed that I’d still have to carry the bloody stuff from the car park. I use cycle panniers attached to the armrests for load-carrying, which makes the chair too wide for the doors (the traditional load-carrying on the seat back is only a viable option on old-style tubular frames with fixed seat backs, otherwise you risk damage to the tilt mechanism ratchet). I can’t carry the panniers in one at a time on my chair, either, as I don’t have enough hands – too many bloody firedoors to negotiate.
I also specifically asked cardioguy about better heart failure drugs than what I have at present (Candesartan, a.k.a. Amias), which, other than improving the action of my diuretics (see above!), appears to do nothing else perceptible – my heart function remains just as screwed and erratic, and my pulse just as weak and tachy, as it’s been for 15 months and, subjectively, it’s getting worse. I don’t doubt that it is subjectively too, but no-one appears to have any interest in finding out.
And – I know I keep saying this but it still needs an answer – I want to know how I could go into hospital with no heart problems and come out, after just 4 days, pretty much crippled by heart problems – just how the fuck does that work? I’ve been castigated of late for swearing,** but sometimes an Oh dear me! or bloody hell, simply isn’t adequate!
**I’ve also been complimented on doing so creatively – go figure! By women both times, btw.
Of late, I’ve also begun to suffer from severe cramps in my hands and feet – that both are on the outer limits of my circulation hasn’t gone unnoticed. I’ve had the problems with my hands for a few months, it’s painful but manageable. On Sunday, though, I had the most agonising muscle spasms in my feet, particularly my right foot. The pain was so severe that the very thought of its return has kept me awake for most of the week and my foot, though now relaxed, still hurts (it’s now Wednesday).
The thing is, I’ve had problems with cramp in my feet for years, though not of this magnitude, so I can’t be sure it’s related to my heart problems now, despite the increased severity and duration. I normally treat the problem with magnesium, which is very effective – but not if I don’t take it, and I haven’t for a few months, not on a regular basis anyway.
Also, Sunday, I was on my feet rather a lot, taking advantage of a reasonably good day to indulge in some food-related activities, which mean I was on my feet a lot more than normal, and I was wearing my boots (I’d been to Sainsbury’s earlier in the day – because no matter how carefully you plan one’s online shop, there always something), of which my very swollen feet tend to take a dim view – did that cause the cramp (I say cramp because I can’t think what else it could have been, but there were no knotted muscles, or toes at unnatural angles, that I associate with foot cramp, so was it a temporary circulation problem caused by my foot being confined for very much longer than it would normally be? Because if so, that could be dangerous as well as extremely painful.
Anyway, I’ve been taking magnesium (600mg a day and not wearing my boots since then, and so far (Wednesday), so good, though my foot is still sore, which is making me think the problem was one of circulation, not simple cramp. I need to discuss this with the cardiologist – but how?
So, back to my tardy cardioguy, and it’s been suggested – why didn’t I think of this? – that Arrowe Park Hospital, in not offering me appointments that I can actually keep, that fit in with my disability(ies!), is guilty of discrimination. The consultant, too, presumably, the more so since I made him aware of the severity of my disability – I can’t believe that in a month he can’t find one slot that fits in with my availability. It’s not as if I’m asking for a bloody night shift!
It has occurred to me, and others, that the sensible course of action would be to coordinate a bunch of tests, admit me for 48 hours – just keep me away from the incompetent buggers on ward 32! – and run the tests. Not least because every trip to the hospital costs me the better part of £20 in taxi fares (less if it’s a driver I know, but many charge a flat tenner for the hospital run, which I’m pretty sure is illegal).
OK, that has the potential to be buggered by emergencies, but so have normal appointments. I don’t – other than my being in Arrowe Park – see any real problem.
But what, realistically, do I do about Arrowe Park Hospital, and the consultant, being in breach of the Equality Act by making no attempt to accommodate me? And, I’m sure, not just me – they seem to assume that if you’re not sick enough to be an inpatient, you’re fit enough to be at their beck and call as an outpatient at any hour of the day when, by definition, if you are an outpatient, especially at the cardio clinic, it’s a safe assumption that you’re pretty damn sick to begin with without, in my case, the rest of my baggage.
Clearly, I don’t want to piss off the consultant, but as it seems clear he’s not going to talk to me voluntarily anyway, what have I got to lose? Because if I don’t get some more effective treatment, then there’s the prospect of dying sooner than I should, or lingering, profoundly disabled, which has even less attraction.
At the very least, drugs that give heart function a boost, like Digoxin,** which is specifically for treating heart failure, might well improve my day to day functioning, which right now is limited to sitting in front of this computer, with occasional excursions to the kitchen on good days (which are becoming fewer, though I have had a good spell of late – DWP note – good by my standards, appalling by a normally fit person’s), and a once a week trip to sit in the pub (and even that, now, isn’t always possible). Note the emphasis on sitting. That’s because I get breathless walking to the bathroom every 10 sodding minutes! Anything more ambitious is out of the question.
**Digoxin improves exercise tolerance, which is exactly what I need. It has no effect on mortality. Seems a good deal to me – the overall outcome is no worse, but in the meantime I can do more – what’s not to like? I’m seriously tempted to buy my own. Don’t fret, I know as much about medication for this condition as my GP, quite possibly more, as I’m able to focus on just that, and I also have a recent copy of the British National Formulary – one of the places GPs get their own drug information – I’m well placed for self-medicating, and it would cost me less that 7p a day. I’m seriously tempted.
Frankly, I want to get more out of whatever time I might have left – sitting around waiting for the axe to fall, with minimal medication, simply isn’t acceptable – there has to be more. And that can’t happen without better meds, which I know full well are available – there are at least 43 drugs specified for heart failure, in 4 or 5 classes. I’ve tried 2 drugs from one class, ACE-inhibitors. That’s not enough – I should be able to try, and/or combine, drugs until I find one, or a combination, that gives me maximum benefit for the fewest problems, and that’s just not happening. NOTHING, in fact, is what’s happening.
I was about to blame my GP, who hasn’t been near me in a year, which is inexcusable as he’s in the building a couple of time a week, but it’s the consultant who’s at fault here. This is what his hospital listing says:-
“General cardiology including Diagnosis and management of coronary heart disease, heart failure, valvular heart disease, pulmonary hypertension, and arrhythmia.”
So he’s clearly the right guy, and we’ve done the diagnosis bit, that was done in May 2011, and screwed up, which is why I needed a consultant cardiologist in the first place, to sort out the mess and confirm what I already knew (those in bold, above, apply to me), so where the bloody hell is the management?
Let’s face it, he’s seen me, he has my records, he’s run a whole bunch of blood tests plus an ECG and spirometry last time I saw him, so where the hell is my follow-up appointment? But he knows what’s wrong (see footnote #), I don’t actually have to be present for him to prescribe, FFS! He can do that via my GP.
He knows I have heart failure, that’s no longer in the slightest doubt (and never was except in the pea-sized brain of a GP with delusions of grandeur), and regardless of whether it’s possible to run all the tests he wants to, he can surely treat the basic condition, which he has failed, utterly, to do. About the aortic valve calcification and stenosis, there is nothing to be done except surgery which, for reasons I’ve explained previously, I’ve ruled out, not least because I might not survive the surgery, the odds are against it, and a preliminary diagnostic procedure carries a 24% risk of stroke). I’ll pass.
It just beggars belief that I could have a third, as yet unknown, condition, unsuspected for 67 years (like the hole he thinks I might have in my heart**), that’s the causative agent. I’m just not buying that at all. And that’s not denial, it’s simply that the odds against having something as yet undiagnosed are positively astronomical.
**Which would surely have shown up on the echocardiogram. I don’t trust the GP “with a special interest in cardiology” who reported to me on the echo, she was a cretin, but I do trust the tech who carried it out. I just wish they let techs talk to patients – we’d then get information not filtered through a doctor, which, for an admittedly small proportion of us, would be invaluable.
# I have heart failure, that’s a given. Cardioguy says it’s not associated with the aortic stenosis, caused by the calcification (though this does cause heart failure). However, I also have severe COPD, a side effect of which is heart failure (aka Cor Pulmonale), and I was diagnosed with early signs about 12-15 years ago (I can’t say for sure when, as my memory, the detail anyway, prior to the last 18 months or so and after 1986 is mostly gone), so even though I was asymptomatic prior to going into APH, it must surely have worsened by now. So where’s the mystery? I have two conditions which cause heart failure, one of which apparently already has – I just don’t see a mystery that needs potentially dangerous tests to investigate.
Surely the important thing is that I do have serious heart failure and that it needs adequate treatment, which it’s not getting. Finding out the cause is just gravy – it won’t make me live any longer!