My current heart meds are sustained-release Diltiazem,** 180mg every 12 hours, which I was taking when this whole mess started but which my GP stopped because it can be dangerous in heart failure (despite the fact that it had proven NOT to be dangerous during the two months when he was ignoring me). However, the consultant, last time at Arrowe Park Hospital, prescribed it and my GP was happier listening to him than to me. After all, what do I know, I’m only the patient!
**Also beneficial in COPD.
The same consultant also prescribed the beta-blocker, Nebivolol, at too high a dose (in effect, he prescribed for my hypertension, ignoring my heart failure, which needs a much lower dose – and we all know how well that worked out).
However, before everything went to hell, it did, briefly, work very well, and my heart, without it, became even more hopelessly unstable, tachy (125bpm), irregular – all the crap I’ve described previously – and I felt desperately ill, so I decided I’d reintroduce it.
Last time I wrote about this I got the dose wrong. What I’m now taking is 0.625mg, a quarter of a 2.5mg tablet, every 12 hours, which needs great care in cutting to get an accurate dose. The biggest problem is that, although the tablets are scored, the scoring is inaccurate and often way off centre, so rather than break them in half as I’d been doing, I now cut them in half before cutting into quarters, which is much more accurate.
On that combination of Diltiazem and Nebivolol, my heart rate is normal (OK, it occasionally goes off on one,** but mostly it behaves), my pulse is strong, and my BP is fine.
**In which case 100mg of potassium chloride brings it back into line.
So I’m sticking with this (it’s possible, in time, that I might be able to increase the dose to 2.5mg in two stages, which might be more effective – we’ll see), and I see no point in returning to APH in January, assuming I’m still here, not least because they seem intent on making it impossible.
They originally gave me an 11.15 appointment (chances of making that are very slim, but they insist there’s nothing later). Since then they’ve changed it twice, it’s currently 10.15, and there’s not a snowball’s chance in hell that I can keep that appointment.
I have a feeling they’re taking the piss because I’ve been making waves – the receptionist, last time, made it quite clear I wasn’t her favourite person. But here’s a thought – the cardiology clinic runs all day, so why not, right from the start when I told them I had problems with morning appointments, give me an afternoon one?
There’s another reason, too. As I mentioned, the current guy is focussing purely on my high blood pressure, and utterly ignoring my aortic valve calcification and heart failure-related problems – and they’re the things that are going to kill me.
There is, in fact, no specific treatment for either, though low-dose Nebivolol can help heart failure, and it seems to be doing so to some degree. Surgery might fix the valve, but it would still leave me with my COPD and the heart failure, so there seems little point given the risks of surgery (the aortic valve is the main outlet from the heart to the rest of the body and replacing it is not without risk, the biggest being a blood clot in the brain – a stroke).
I’ll write to the consultant, telling him what I’m doing, and pointing out that the times I’m being given make it impossible to get to his surgery,** even if I wasn’t totally housebound – which I have been now for a couple of months, and I can’t see that changing any time soon.
**And telling him he went with too high a dose with the Nebivolol, failing to take my heart failure into account – might stop him doing it to someone else.
So, for now, at least, I think I should just carry on the way I am until such time as anything changes for the worse.
None of this, by the way, mean I’m getting better – that’s not going to happen – but, for now, at least, I’m stable.
Not back to where I was about 8 weeks ago when this current crisis kicked off – as I keep saying, and some people seem unable to understand, this train runs in only one direction, and that’s downhill – but stabilised where I am right now and, hopefully, that’ll last for a while…