Oh look, I have another letter from Arrowe Park Hospital, this time about my complaint and guess what? It’s my fault! No surprise there, then.
I am, however, less than impressed by their claim that my relationship with Newall has broken down on my part – the bastard bloody well ignored and neglected me for 4 months – just how the hell is that my fault? And they’re still sticking to their no tests, no meds schtick, and I still don’t see that as anything but blackmail. It is perfectly possible to medicate the baseline condition without tests as, indeed, they were willing to do when I was an inpatient.
Here’s the relevant extract:-
As I’ve said previously, admitting me for tests is a good idea, my reservation being that it’s APH I’m being admitted to.
Yes, I know that it looks as if I’m getting what I want but still being awkward about it, to those who are unfamiliar with this long-running farce, but last time I was an in-patient, the bastards made a serious attempt to kill me.
For new readers, January last year I was admitted with pneumonia and empyema and while asleep, with my lungs already full of fluid, pus and assorted crap, some maniac connected me to 2 litres of i-v saline. I woke, with my breathing even more impaired, and made them disconnect it. That event is not recorded in my notes, of which I have a copy, and I have little doubt that had I received the full 2 litres (as it was I got 300ml), I might well have died. And it still wouldn’t have been recorded, for the simple reason that somebody screwed up. The other reason – that it was a deliberate attempt to fuck with me for refusing to hand over my personal meds – should beggar belief. It doesn’t.
They also suggest I might prefer another hospital. I would, but that would be even harder to get to than APH, so that’s out (APH is 15-20 minutes away by taxi).
So, if I accept their offer of admission, there are three tests outstanding – a 24-hours mobile ECG (as I most certainly am not mobile, I don’t know how useful that could be), an overnight monitoring of oxygen levels, which might actually be useful, and – and this is the problem – a chemically-induced-stress echocardiogram, which I have no intention of submitting to as it can be dangerous. This is what I said about it yesterday (just a part, the full version can be read here):-
That works by injecting drugs to put the heart under stress, simulating exercise on a treadmill. I’ve done the treadmill thing and I know from that, and the experiences of others, that they routinely push patients to do “just a bit more”.
However, injecting chemicals is a different ball game, and if it all goes tits up I’m reliant on a person over whom I have no control to inject a neutralising agent without delay – assuming that’s actually possible – nothing I’ve read mentions that possibility at all. Of course, how quickly that would return me to normal if it is possible, and how long it would take me to get the injection, I have no idea, as these things are outside my control. With the treadmill, pushed too hard, I could simply hit the stop button.
Once the drugs are in my system, though, I have no stop button. I am entirely reliant on some bugger who, for all I know, might be a “just a bit more” obsessive – and that could kill me.
Then I stumbled across this abstract at The Lancet. The list of things that can go wrong, and sometimes dangerously so, is seriously worrying, especially the final paragraph:-
Life-threatening and/or longlasting complications may occur during dobutamine/atropine stress echocardiography.
Sometimes an alternative to dobutamine is used, but I see no reason to expect a significantly different outcome.
And, of course, I know exactly what happens when I exercise – which is one reason why I get all my shopping delivered and use a powerchair indoors and, if it ever stops raining and we actually get a summer, outdoors, too. What happens is absolutely terrifying, my heart feels as if it’s flailing around like a wet leather bag, my heart rate goes through the roof, and it also comes to a complete halt for a few seconds, repeatedly, I can’t breathe (I can, insofar as the air goes in and out, but the effect is minimal), and it feels as if I’m about to die. On several occasions all this has caused me to pass out, not to mention triggering bouts of angina, which is why I now take very great care never to exert myself to that point, so there is not a chance in hell I’m going to let anybody induce that state.
I wasn’t convinced this test was actually necessary, but a little research shows in can be valuable. However, I still feel the risks are too great.
If my heart problem was the only one I had, I’d go for it, but it’s not, nor does anyone know what the effect of injecting the stressor drugs into my already drug-laden system might be, and I don’t want to be the one to discover that the effect is fatal or seriously damaging. I can’t see the effect being any other than some degree of bad, given the next paragraph.
I am already seriously disabled, I don’t need to be made worse, or killed for that matter, and the risk of dangerous events, defined as life-threatening complications or side-effects requiring specific treatment and lasting more than 3 hours, or new hospital admission, according to that Lancet article, is 1 in 210. How many of those events ended in death isn’t mentioned – I seriously doubt that the figure is zero.
But even discounting the prospect of death, that’s still a 1 in 210 chance that I’ll come out very much worse than when I went in, and that I risk I’m not prepared to take.
Actually, it’s a risk I dare not take even I if I were willing to do so. I can barely look after myself most days as it is. If that’s made any worse I’ll wind up in care, and that’s not an option I’m willing to even contemplate.
However, I’ve been looking at CT scans in heart failure, with specific reference to valve damage, and it seems that all the information necessary can be obtained that way. True, I may well be injected with a contrast medium, but that’s happened before, with an angiogram, and I was fine.
The thing is, Newall suggested a CT scan, before deciding it was a better option to fill my body with chemicals of totally unknown toxicity when combined with my own drugs. So why did he back away from this?
This website says of CT scans “In cases that are clinically troublesome, multidetector-row gated computed tomography (CT) scanning may provide excellent analysis of the heart and reveal the nature of the pulmonary edema.” And if my case isn’t clinically troublesome I don’t know what is.
This American College of Cardiology website goes into rather more detail, if you go to the section What Does Cardiac CT Show? You’ll have to scroll down as the internal page links in the margin don’t work.
There’s also a possibility it might provide an answer to how I went into APH with an apparently health heart and emerged housebound and seriously disabled.
This British Heart Foundation page also shows that a CT scan is capable of providing the necessary data.
So, this is how it’s going to go. I’ll write back to APH asking, first, since Newall ignored me for 4 months, in what possible way is that may failure, and also telling them I am not going to have the stress echo, and explain my reasons, as above, and point out that a Newall had originally opted for a CT scan, then I would be happy with that as it’s non-invasive and doesn’t involve toxic chemicals. And if the still want to admit me to do the other two tests, I’ll do my best to accommodate them.
The bottom line though – and this is clearly something they have still failed to grasp at APH – is that it’s almost impossible for me to plan ahead. I simply don’t know, today, how well – or ill – I’m going to be tomorrow. It’s been that way for almost 30 years, and this past 17 months it’s become even more unpredictable because I have no good days any longer– just days that are shit, to a greater or lesser degree. And mostly that precludes being able to spend 4 or 5 hours getting ready for a hospital appointment.
And it wouldn’t go away even if a CT scan was offered – I have no idea what the answer is.