Yet another letter from Arrowe Park Hospital…

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:-

Click to read, Back to return.

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.

19 thoughts on “Yet another letter from Arrowe Park Hospital…

  1. You will have to tell them that you are willing to be admitted for tests (but not the stress echo), that they will have to arrange transport for you to get there and home again, and that they can collect you any time after 10.30am (or whenever). Even if you’re having a bad day, you will have to go with them when they come to collect you.

    I can’t see any other way around this.

  2. I think I agree withTTD……make them collect you, and once you are in, you dont have to have the test you dont want.
    I agree that you may not be well enough to get ready, so go ‘not ready’…pyjamas/unwashed/unshaven etc. At least you will be there, and to get rid of you they will have to arrange transport back otherwise you’ll stay!
    I always read your ‘rants’, and I worry about you and what is happening to you, as, no doubt, others do.

    • To be honest, unless I have to go 6 times, at £15 each round trip, plus tips – which was previously the case, and why I complained about the cost – I’d sooner get a taxi. Much quicker and more convenient.

      And I think they’ve moved away from the CT scan on cost grounds – ultrasound for an echocardiogram is much cheaper, but I’m going to push for the CT scan – it the safest option and, if they honestly believe testing is essential (I don’t, I think it’s just a data-collecting exercise – it won’t change anything), they’ll accommodate me. Possibly!

      And there’s still one question everyone is shying away from – how did I go into APH with a healthy heart and come out 4 days later terminally ill? What did they screw up? I think the empyema damaged my heart (in this pic the right lung is infected http://en.wikipedia.org/wiki/File:Empyema.jpg ) Be warned, it’s gross! In my case, it was the left lung, which could easily have affected my heart. It would explain why something which should be a minor problem at my age – aortic valve calcification – was so devastating so fast.

      • PJ’s, or whatever you sleep in.

        Of course you’d rather get a taxi. Who wouldn’t? But get the hospital to arrange transport, and if you’re well enough to get yourself there by taxi, you can cancel the hospital transport that morning.

        You have a lot of people out here who care, as you can see. Consider us your virtual family, nagging you!

        • I think what I sleep in – or, rather, don’t – would frighten the horses.

          Thing is, though, the way the transport system works, you tend to get a 2-hours tour of the Wirral while they pick others up, which never gets anybody there on time (and if I’m late I might lose the bed), plus you hang around for hours waiting for a lift home again. Taxi is much better.

          Anyway, while Newall’s letter mentions transport, the last letter doesn’t.

          But if I get a bed for the night they can fit me with the ECG and O2 monitors in the afternoon, I’ll doss there overnight, take my chair out and mooch around the adjacent park during the day, and they can have the equipment back 24 hours later, and I’ll go home. The timing should suit me (I say should because I’m a hell of a lot sicker than I was in January – which was a major part of my complaint that they’ve ignored – I sat here getting worse for 5 months, while bloody Newall ignores me), and it’s 2 taxis instead of 4.

          And I want a CT scan or all bets are off.

          • “And I want a CT scan or all bets are off.”

            If I didn’t know better, I’d think that you were looking for reasons not to go at all. Surely two tests are better than none?

            • What I mean is I want a CT scan, not the dangerous test they have planned – whether they then still want to do the minor tests on the basis of a bed for the night, is up to them. They do have a CT scanner, so there should be no problem – there’s also no reason why I couldn’t have had a scan in the last 5 months – can you imagine how much that pisses me off, that they’d go for a test known to be dangerous, that might conceivably shorten my life even further, in preference to one that’s not harmful at all? There’s a blog post coming on that very subject.

              As far as finding out what’s going on in my heart, it’s a CT scan or nothing, and that’s not negotiable.

              And let’s not lose sight of the fact that last time the bastards tried to kill me! I’m seriously disinclined to give them another chance, so I will be imposing the condition that they keep me away from Ward 32, though it’s conceivable that the incompetent clowns have been rotated to other wards by now.

  3. Hello Ron, I am from Poland and I’ve been reading your blog for quite some time now. I just wanted to tell you that I wish you the best and I really hope you are going to get the help you need and deserve.

    • I’m 99.999% certain that there is bugger all the hospital can do for me as a result of the tests that they can’t do without them – but they’ll never admit what I know to be true – that, in my case at least, these tests are a massive waste of resources.

      The 24-hour mobile ECG is unlikely to yield anything new, simply because I sit here all day (when I’m not peeing for Britain thanks to the diuretics!). If I was able to go for a walk, I’m quite sure it would show a lot of problems, but I’m not.

      The overnight oxygen monitor is because I said I woke up breathless in the night. I have COPD (including asthma), and heart failure. NOT waking up breathless would be a minor miracle!

      The stress echocardiogram they can keep – it’s just too dangerous. I accept the test might be useful, but there’s no guarantee it will and I feel the risks are too high. My life expectancy is already short, I don’t need anything to make that even shorter!

      But they won’t prescribe for me unless I submit to the tests, especially the stress echo, so I’d be no worse off just walking away.

      Rant over ;)

Comments are closed.