Chronicles of the Heart, Part 52 – Not Dead Yet!

Well, the year’s end is looming, and no-one is more surprised than me that, barring accidents, I’ll be here to see it. I particularly wanted to be, simply to rain mockery on the2012, Mayan Long Count, end-of-the-world, fruitcakes.

There is, by the way, nothing sinister about the imminent end of the Mayan Long Count – it’s little more than a calendar which is reaching its end, as all calendars must. That’s all.

But, back to me. New blog readers, and Twitter followers that I’ve acquire during the last two years, might not know that I was diagnosed with serious heart failure in January last year (I have a copy of the ECG which records so many defects it’s scary). In May an echocardiogram revealed that I also had calcification of the aortic valve – the valve by which blood leaves the heart on its journey around the body.

Long story short – with heart failure as well, and my troublesome set of symptoms (had I been asymptomatic, I wouldn’t have had a problem – the symptom-set was a game-changer), the only two research papers I turned up online said I had about 2 years from diagnosis (since medical incompetence had delayed the echocardiogram by 4 months, I counted the two years from the end of January last year). In fact, one paper said death would occur within 2 years of diagnosis, and the other said the 2-year survival rate was 50%, which for me seems, now, to be the applicable one, not least because for the first time since I got out of hospital, my heart is under control, and that is entirely due to my own expertise after an intensive study of the subject – all the medical profession has done, to date, is screw things up.

My first cardiologist, whom I finally got to see in January this year, after a delay of almost exactly a year, agreed with me about my interpretation of the research, and that it was just a matter of waiting to see which way the averages played out – either in my favour, or against me.

As things have turned out, unless something completely unforeseen happens, the odds are running in my favour, finally (OK, I know, officially, the year isn’t up until the end of January, but I’m feeling confident, for the first time since this bucket of crap was dumped in my lap).

But, let me be clear lest there be any misunderstanding – I’m not getting better, that’s not an option, and I’m still terminally ill. What I am, for the first time in two years, almost, is stable. I see no reason, unless some doctor decides to interfere with my meds, why this should not continue.

However, even before these heart problems, I never expected to reach my current age, 67, anyway, because of my severe COPD (probably the cause of the original heart failure).

COPD is also the reason why I’m not even contemplating an aortic valve replacement – I see no point in undergoing the pain of surgery to – hopefully – fix my heart when that would still leave me with lungs that are shot to hell, and getting steadily worse.

I don’t see my housebound status changing any time soon either – my feet are still far too swollen to wear any sort of footwear, even socks most days, which precludes going out, even in my powerchair or my manual chair. Walking is not an option.

But, I’m still alive, it seems likely to continue for the foreseeable future, something I didn’t expect to ever be writing even a month ago, and I can be content with that.

Mostly…

***

NB: For anyone who’s curious, this whole sorry saga of medical fuckuppery is easily found. Search the blog** for Chronicles of the Heart, in the previous 51 instalments of which you’ll find most of the tale, and also for Arrowe Park Hospital, where it all started, and where it ends, as I have no intention of going near the place ever again, if I have any say in the matter!

**Sorry about that, but I never expected it to get to 52 instalments (and, I have to say, remain popular), and by the time it occurred to me to link them all, it was too big a job.

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8 thoughts on “Chronicles of the Heart, Part 52 – Not Dead Yet!

    • I’m waiting for a letter from Arrowe Park Hospital, complaining that I don’t given them enough credit for not actually killing me . . .

    • The change, Bev, is entirely down to me re-organising my heart meds. If I hadn’t I seriously doubt I’d have seen the New Year.

      The fact is that Nebivolol was seriously over-prescribed gave me an entirely wrong impression of it. Starting low and building up is clearly the way to go – which is what the literature pretty much insists on.

      At the moment I’m taking the dose that was originally prescribed, the important difference is that it’s in two doses 12 hours apart, not once a day. Nebivolol, in some people – and I’m apparently one of them – has a very short half-life, so once a day left me effectively unmedicated for about 15 hours a day – no wonder the results I was getting were wildly variable.

      So now, as I said, I’m stable, and I have ample scope to increase the dose if I need to, which is why I’m feeling a lot more confident than I was that I might actually have a future.

  1. I hope you continue to stay stable for a long time yet. Your blog certainly helps with such a lot of things, serious and non-serious – but most of them have that humour of yours coming across, I am a firm believer that humour helps an awful lot with terminal and chronic illnesses. I try my best to maintain a sense of humour but it’s not easy as you yourself will know. Just keep us entertained with all you do for a very long time – that’s an order :)

    • OK, you’ve talked me into it.

      Just spotted my GP in the building – apparently he’s here almost every day. Guess how many times he’s given me a knock to see how I am . . .

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