Having given the matter a lot of thought over the past few weeks, I’ve decided to pull out of the tests my cardio consultant is lining up for me.
Partly this is a reaction to his snotty response to my telling him, politely, that I was withdrawing from a high-risk test, as I felt such a risk level was inappropriate in a purely diagnostic procedure (a 24% risk of stroke). I might have felt differently had it been a life-saving, or even enhancing, procedure – but I have my doubts, as my brain is pretty much the only organ that still works properly, and I’m sure as hell not putting it at risk.
The main reason, though, is that I can’t see any way these tests will benefit me – what ails me can’t be cured, and to a large extent isn’t even treatable – and increasingly I feel, rightly or wrongly, that the tests aren’t for my benefit; that I’ve become a research project.
Last week I should have had a 24-hour ambulatory ECG, which would have been fine by me except that I was too ill to go to the damned hospital, especially at 10.00, by which time I’m often not even up. Not because I’m having a lie in, but because I’m a basket case much of the time. In the event, I felt so dreadfully ill I couldn’t even muster the energy to phone and cancel – I just let it go.
I’m profoundly depressed, I’ll concede that (I think anyone in my position would be). That gets in the way of my phoning to cancel (when I’m depressed I develop an aversion to the phone), it doesn’t, I believe, greatly influence how I feel about the pointlessness of the tests.
Tomorrow, I’m due for a “Specialised echocardiogram” which is not without risk and about which the oft-repeated medical website advice is “Well, if anything is going to go horribly wrong, at least you’re in hospital.” Well here’s a thought – how about not exposing me to the risk in the first place?
The plan is to inject me with a drug which will jack up my heart to simulate exercise. I know what happens when I exercise for real – my heart malfunctions massively, feels as if it’s flopping around like a punctured leather bag, stopping and starting like a moped on bad petrol. I can’t breathe (more specifically, I can breathe but it has zero effect), it feels as if there’s an anvil sitting on my chest, I’m wearing a collar several sizes too small, and I have to stop after a few seconds, because if I didn’t I’m damn sure I’d be in deep shit.
I’ve zero desire to simulate that effect with an injected drug, thank you very much – because how would I stop it? I can stop actual exercise until things settle down, but the drug is in there until it metabolises, presumably. Or can they neutralise it extremely quickly? (And how, if my heart stops or otherwise malfunctions, impairing my circulation?) I don’t know because I’ve been provided with no information that’s of any use.
Things might look better if I had more information – what I have from the hospital seems aimed at a particularly dim child – but all the online information about this procedure is in agreement on one point. I could die, or be seriously compromised.
Well, thank you very much, but no thanks.
Next, he’s arranged for a sleep apnoea test, which means I’ll have to sleep in something like this. No problem, if my friend can do it, so can I – it’s the necessity that I question.
This is because I told my GP, and he told the consultant, that I wake up breathless in the night. Which is true. However, as well as heart failure, and my aortic valve calcification, which cause their own problems, I have asthma, bronchiectasis and severe COPD (when you develop COPD, the causative conditions don’t go away, you simply add emphysema to the package) – it would be a goddamned miracle if I didn’t wake up breathless in the night. We don’t need to go looking for other reasons. And, of course, it still requires hospital visits on consecutive days – a problem that, so far, is insurmountable.
Only a heart-lung transplant at best, or an aortic valve replacement at least, would improve matters – and as I’ve explained previously, I have no interest in the latter, and I find the thought of having a large part of another person inside me deeply disturbing.
There is just so much wrong with me that addressing one or two aspects will, in reality, change little as I am too disabled to capitalise on any improvement in lung or heart function. Neither, for example, would reduce my levels of joint or muscle pain, or restore my walking ability.
There was mention of a CT-scan of my heart – a risk-free way of seeing what’s going on inside it without endangering me, but it hasn’t been offered.
There’s another problem, too. Some of the tests require that I lie flat. I can’t. Partly because I can’t breathe when I do so, and partly because I actually can’t do so, as a result of arthritis. This appears to be something the consultant doesn’t actually believe, and yet the condition that inhibits my breathing, called orthopnea, frequently accompanies heart failure.
In addition to that, I am in the middle of a relapse, and a bad one. It was triggered by having to walk to the Path Lab from cardiology – 20-30 times as far as I’d normally be able to walk without problems – and hugely exacerbated (how’s this for irony?), by having to unpack my new powerchair last Monday.
I’m not sleeping (yet again), just 3 hours a night if I’m really lucky. I have zero energy. It took me, last week, 5 days to cook a rabbit stew and consign it to the freezer. Should have been a day and a half, tops.
Even undressing and dressing is a major challenge that I avoid, at times, by sleeping in my clothes. I’m not happy about this, you understand – it’s just a fact of life right now, and having to do dress and undress in the hospital does nothing to improve my overall condition.
Things will – hopefully – improve, but not in time to keep the scheduled appointments.
If my heart were the only problem, I’d say yes, by all means, do what you have to do to fix it. But it’s not, not by a bloody long way, and that creates serious, and possibly insurmountable problems. I think, even allowing for my deep and abiding hatred of Arrowe Park Hospital, it would be sensible to admit me for 24 or 48 hours and run all the tests – the safe ones anyway – and I could get plenty of rest. Just keep me out of ward 32!
So I’ll write to the consultant, tonight – can’t do it during the day as his secretary is too dumb to switch the call to fax when she hears the modem noise – she just shouts at it! I’ll try to make him understand that right now I’m simply too ill, and in too much pain, which is grossly under-medicated, to do what he wants me to do – something he fails utterly to grasp so far, and that the fact that I made a stupendous effort to go and see him at the beginning of January is one of the reasons I’m so ill now.
If he wants to rearrange things for a couple of months down the line, when hopefully I’ll feel better, and to a time-table I can actually comply with (i.e., around midday, not early in the morning or late in the afternoon, and not consecutive days), then fine. If not, then too bad. Because here’s the thing – the chances of me dying this year are 50-50, but not a single one of the scheduled tests will improve those odds in the slightest degree, and tomorrow’s might actually worsen the odds were I to submit to it. So what would be the point?
All of that might seem perverse, considering that this is what I’ve been fighting for, for the past year. It is, though, that very fact that’s the problem. I’m exhausted – I have no resources, physical or emotional, left to carry this any further.
Were I to die, it would, frankly, be a relief.
And if neither the consultant nor my GP can understand that, then fuck the pair of them.