Chronicles of the Heart, Part 28…

One way or another, endgame is getting closer – I can feel it. I’m getting worse pretty much week by week. Day by day it seems, sometimes. Officially, I’m not supposed to be but, hell, officially, until June last year I didn’t have a heart problem – because nobody bothered to look, or listen to me. And when they did, as we’ve seen, they fucked up – didn’t you, Dr. Abdelmouti?

I’ve received an appointment letter from my cardio guy or, rather, his secretary as he’s on holiday, inviting me to take part in a “specialised echocardiogram” during which “You may require a tube to be inserted in your arm to give you special medication…”. Ooooh, special – do I get a sweetie too?

FFS, what am I, 10 years old? Treat me like an adult. Give me some bloody information! I realise this is a form letter, but how hard would it be to have a couple of versionss, one for patients who clearly have no medical knowledge and are happy to keep it that way, and one for those of us who actually have considerable medical knowledge, are happy to add to it, and want detailed information?

A rummage around Google suggests, on the balance of probabilities, that this is a stress echo. Hmm… How effective would that be with my powerchair on the treadmill?

In 1986 I had a stress test to try and find the cause of angina. At that point I was exceptionally fit and took the machine to its limit (but even then they accepted that there was a risk, because of my respiratory problems, and has a defibrilator and i-v Salbutamol stranding by. That was then, this is now, and I’m not going anywhere near the buggerdly thing.

Walking around my shoebox flat is challenge enough – I wouldn’t survive a treadmill. At the time of writing, standing without falling over is the height of my ambition. Yesterday morning I installed a UPS unit for my PC – it’s hard to find a simpler PC-related job, and yet it totally wiped me out. My physical reserves are zero.

There is though, a chemical alternative – the “special medication” presumably – the injection of drugs that speed up my heart to simulate the effects of exercise, and I have a seriously huge problem with that – the effects of exercise bloody near killed me.

My heart can’t cope with even a gentle stroll, downhill, without feeling as if it’s about to strip its gears, malfunctioning like a mad bastard, throwing PVCs as if there’s a fire sale on the buggers, stopping, hitching, accelerating, spasming – all this accompanied by the feeling of an anvil on my chest and a collar three sizes too small. Hell, bastard thing is doing a shuck and jive while I’m just typing this.

There’s another problem, too. All sources acknowledge that there are risks associated with this technique, but nobody seems to have thought it desirable to quantify those risks. That’s simply unacceptable. No process, or drug, is entirely without risk, and I have a right to know what they are.

I’m sorry, but unless I get some numbers, and they’re reasonably favourable, no deal.

And I know some of you will look at this, remember my refusal to  have a particular type of angiography, and think, awkward bugger!

Maybe so, but consider, none of this is going to even peripherally impact on the main problem or its prognosis.

I will continue to have heart failure, and aortic valve calcification and stenosis, they will continue to deteriorate and they are still going to kill me, and there’s an even chance it’ll be this year (for those who have missed earlier instalments, the 2-year survival rate for what I have is 50% and I’m in my second year). Add in my COPD, which is also going to kill me at some point in the next few years, if I’m still here, with the heart problems failing manifestly to improve that situation, and I’m pretty comprehensively fucked. All the testing in the world won’t change that, it will just let a little light into the dark corners of the why.

Hence my reluctance – flat refusal – to submit to any invasive and/or risky diagnostic procedures. Life-saving procedures might be worth the risk – depends on the risk – diagnostic procedures with any risk, sure as hell not.

 

7 thoughts on “Chronicles of the Heart, Part 28…

  1. Hi Ron even though you have been through the lot with these so called experts,you still always bring a smile to my face when you write about things, i just wish for your sake that the listen,as they say its never to late until the fat mans sings.
    Take care
    Tom

  2. You are not an awkward bugger Ron. Your body, your choice. You have to live – or die – with the consequences, not the doctors. For the same sorts of reasons, I refused surgery a couple of years ago.

    • I’ll be refusing an aortic valve replacement too, if it comes to that – too much risk for very little benefit in terms of life expectancy, even if I get through the surgery, which is by no means certain.

      Well, that was weird – just had to approve my own reply!!!

  3. Hi Ron, I am one of your newest readers. I stumbled on your ‘rants’ by accident, but I’m glad I did. I have fibromyalgia/ME, osteoarthritis and asthma. So on any one day if the fibro doesn’t get me the arthritis will! Having said that after reading your stories my aches and pains seem like nothing. I expect you don’t want sympathy but sorry, mate you have mine!! I can’t imagine being in your shoes, at times i don’t want to be in mine but I soldier on.
    Well, I won’t bore you any more, just wanted to say hello really. Hope you are ok and enjoyed the pub!
    Take care,
    Val x

  4. Like you I have had m.e. for over 23 years – numerous heart attacks – stents – broken legs – 8 shots of insulin daily – sleep apnea – fibromyalgia – chair lift – bring it on I am invincible until death corrects my current philosophy ! Good luck Ron – found the site via another m.e. victim.

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