Another cardio appointment, and another doctor who doesn’t really listen. My first reaction was, FFS, another bloody fool who won’t listen, but to be fair I did get my meds changed, which is 50% of what I wanted, which is better than my previous strike rate since this shamble first kicked off.
First off, he wanted to know what I was doing in a wheelchair. All the details. I said how long have you got, because it goes back 30 years? But he wanted to know, so we wasted 15 minutes while I explained events that had no bearing on my current heart problems.
Then he said if he didn’t have my file, and I’d just walked in off the street (bearing in mind I was on wheels!), he’d have said I was perfectly fine. To which I said that’s not really the point. is it? Blank look.
Then I had to explain how some days were OK, very rare ones, like today, were good, but most were crappy and many were a total wipe-out. Did he understand that? No. No comprehension at all.
Then he started waffling on about my future, 20-30 years down the line! So I pulled him up.
I said “Look, I have aortic valve calcification, yes?” because he’d skated over that in the middle of some pointless waffle.
“And we know that if I was asymptomatic I wouldn’t have a major problem, but as I’m very much not asymptomatic, this will seriously shorten my life expectancy, right?”
So why the dozy bugger was waffling on about 20-30 years I’m buggered if I know – I’ll be doing exceptionally well to get 30 months.** Nothing’s changed – I have about six months or less if the averages work against me, longer if they work in my favour. And guess when my next appointment is?
So we talked about meds. I made it clear I wanted off Losartan and any of its relatives, as they were doing me a lot damage. So he said he was thinking of Diltiazem. I said fine, I’d been taking it for many years for my COPD, since as well as relaxing the smooth muscle in the cardio-vascular system, it also relaxes the smooth muscle in the lungs (which, for a wonder, he knew – most UK doctors, in my experience, don’t, though it’s been used for many years in the US).
Then I said that while I was happy with it, my GP said it was harmful in heart failure, to which he said no, you’ll be fine. And the question is – and it’s only just occurred to me – is he overlooking my heart failure? Is he siding with the useless bitch who missed it last year? Because if he is, the bloody stuff could kill me – it is quite definitely contra-indicated in heart failure (can’t, off-hand, recall which kind – there are several). On the other hand, I took it for months after first being diagnosed at APH and I was pretty much OK – far better than I’ve been ever since.
So it’s a drug I’m familiar with, and based on past experience, I’m willing to try it. He suggested 180mg once a day (I’d earlier said that I took 180mg twice a day before my GP stopped it), I was about to say how about reverting to the original dose, when he said “But I’ve no objection to you taking it twice a day.” Fine by me.
And he’s prescribed a beta-blocker. I’ll come back to that.
Now, in APH 18 months ago, I was prescribed Digoxin. Never got it, but still. And I want it, as it has one major function – it boosts the heart’s action, allowing a higher level of activity (as opposed to none). So I said how about it, but he didn’t want to go there.
His excuse is the Diltiazem slows the heart, and so does Digoxin (that was about 30 second after trying to bullshit me, telling me, telling that Digoxin works like caffeine. No, it bloody doesn’t! All caffeine does is make the heart beat faster – Digoxin makes it beat more strongly – big difference.
I know for a fact that Diltiazem had no effect on my tachycardia in the past, and I see no reason why it should now, so I intend to self medicate with Digoxin.
Now, back to the beta-blocker. These are contraindicated for anyone with asthma. I reminded him of this, and he said it’s perfectly safe as my respiratory condition is no longer reversible – i. e. I have severe COPD (shortly before that he’d said that there is no record of COPD in my file). I know for a fact that there is, it’s in my records from last year, so I said look, my GPs know I have COPD, I know I have COPD, my history made COPD inevitable. And, I went on to explain, that history would support the diagnosis of COPD (emphysema shows up on x-ray, but without the right history, no-one will be looking for it). Another blank look.
As I’ve pointed out before, a diagnosis of COPD means that you have emphysema. No emphysema, no COPD – it’s the defining condition. There’s a mistaken belief on some ill-informed COPD websites that long-term respiratory illness = COPD. IT DOES NOT – not without emphysema. And what most people, including many doctors, forget, is that the conditions that brought you to COPD don’t magically go away – you still have them, just as I have my asthma and bronchiectasis. And my asthma is still reversible. Not by much, granted, but maybe by enough to cause problems with beta-blockers, which will be monitored very carefully – I have all the electronic equipment I need to monitor both heart and lung function.
So, was it a waste of time? Maybe not, I got some new meds out of it, and got rid of Losartan.
I have, though, serious reservations about Diltiazem and the beta-blocker, and I’ll be ordering some Digoxin later today – it’s very cheap and I’ll start with a low dose.
One thing worth considering – there’s no getting away from the fact that, although spending so much time getting ready was exhausting, I have felt pretty good today, even though I slept badly (not surprising), and got up much earlier than usual – so maybe I should get up earlier more often?
The other thing is that I was worried about taking my manual wheelchair – expecting to be in a gasping, wheezing, heap by the time I got to the clinic. I wasn’t – I was absolutely fine. And because the chair supports my weight perfectly, I had a pain-free few hours.
One final point about APH – what sort of cardiologist doesn’t do an up-to-date- ECG? My last one was in January, and I know damn well I’m a lot worse now than I was then.
**Note for the hard of thinking – you know who you are!
The average life expectancy with my heart condition, without an aortic valve replacement, is 2 years from onset, and I’m 18 months in, at least.
Average means that some people will die in weeks (some unlucky souls in days, even), some in months, basically, at any time up to 2 years, and some beyond two years (I don’t know what the figures are beyond 2 years – I doubt they’re impressive). That means I could die tonight, or I could still be here for Christmas 2013 – THERE IS SIMPLY NO WAY OF KNOWING!
Got that? Good! Now then – how well do you think YOU would cope with that degree of uncertainty? Yeah, that’s what I thought.