This morning, with my heart banging and clattering like a broken sludge pump, and with me becoming increasingly distressed, I then, to make matters very much worse, had an asthma attack which, for me, manifests itself as a coughing fit!
For this I have an inadequate supply of codeine linctus – inadequate because without it I’ll cough until I either puke or pass out – or both, which is extremely dangerous. Coughing also puts a severe – and avoidable – strain on my heart. Not that my GP gives a shit as he flatly refuses to prescribe enough.
So anyway, I took a dose and within minutes my heart had quietened down.
So why did codeine shut down, or at least modify, my heart’s malfunctioning? I simply don’t know, as apparently it shouldn’t have. Next time – and there will certainly be one, it’s a regular event – I’ll use my pulse ox to check on things like heart rate, strength, and regularity, as well as my oxygen level before I take the codeine linctus (and it’s just the linctus, tablets do nothing), and again afterwards.
On a different note, as of today, I am officially totally housebound. I haven’t been able to shop in person for a couple of weeks, it just makes me too ill, and last Thursday is likely to be that last time I go to the pub, too. That – if I continue – really is going to kill me. There’s also the problem that, for a couple of days afterwards, I can barely walk and in excruciating pain. I don’t know for sure why, though I have some ideas. And I’m heatily sick of falling,
The only way that status can change is if I become a full-time powerwheelie, something I’ve been resisting for longer than is really sensible. The big problem is reconfiguring my flat to allow me to do that indoors – I simply don’t have the strength to use my manual chair any longer. Christ, I barely have the strength to turn a tap on and off.
And now we come to my missing cardiologist.
In March I had to pull out of a bunch of tests that I just couldn’t deal with as I was too ill, plus a couple I felt were too risky. He was nice about it, and the very strong implication was that he’d try to accommodate me if I wanted to try again, so on March 15 I faxed him a letter explaining in detail the problems I have going anywhere not just hospital (here), and that appointments for late afternoon, requiring me to use the lift to get to an upper floor, in my chair, at the same time as thousands of visitors were emptying out, simply wasn’t going to happen as it would be impossible. Ditto appointments early on consecutive days – once a week is about my limit, and not early.
That was over 7 weeks ago, since when I’ve heard absolutely bugger all, which given the fact that I’m dying, and need some fucking help, is about as unacceptable as it gets.
I wrote to him a few days ago, a somewhat revised and angrier version of this.
Still nothing. There is no doubt in my mind that I am being discriminated against by Arrowe Park Hospital, Wirral, because making allowances for the limitations forced upon my by illness and disability is just too much trouble.
Or maybe it’s the consultant who simply can’t be arsed. I really don’t know, but I do know that such discrimination is unlawful – something I intend to pursue, assuming his neglect doesn’t kill me, which it well might.
The statistics say I might have two years – that’s not a guarantee, it’s an average. A lot of people get less. I think I’m one of them.
I’m deteriorating rapidly. Over a week ago I recklessly vacuumed my kitchen floor, a space as vast as – ooh – a child’s bed! Next day I seriously thought I was dying.
Obviously I didn’t, but I was so ill I really should have been in hospital (not APH though, no way – bastards almost killed me once, last January, they don’t get a second try), and I still haven’t recovered. Not too long ago – weeks, not months – a few days rest would see me recover from overdoing it – now I don’t recover at all, and there is a remorseless downward slide as each crisis builds on the previous one.
This is not survivable.
Without intervention by the missing cardiologist – or another cardiologist, I really don’t care which at this stage – I seriously doubt I’ll see the summer out, never mind Christmas.
And yet there is no need for that. There are ample drugs available to treat my heart failure, over 40 of them, all it needs is the will to prescribe, to experiment, until we find a drug, or a combination, which treats my symptoms without also attacking me from another direction, or at least not so severely as my current drug.
Nothing, of course, is going to change the ultimate outcome, but there are drugs which will improve my heart’s functioning (Digoxin, for one, and I’m tempted to buy it myself), and some that might possibly give me a little longer. OK, that’s an outside chance, but it’s a hell of a sight better chance than doing absolutely nothing, which is what’s happening now.
But nobody is interested, not my GP, whom I haven’t seen for over a year, despite the fact that he is in this building at least once a week, often more, or, apparently, the cardiologist.
My GP, idiot that he is, has just sent me a summons to go for a Healthy Heart check-up despite the fact that A) I don’t have a healthy heart to check, and B) I’m bloody housebound – I don’t know what part of fucking housebound this useless son of a bitch doesn’t understand!
There is a very good chance, this summer, of my dying from simple, inexcusable, completely avoidable, medical neglect and that, in the 21st century simply beggars belief.