The View From Bed 3…

Apologies in advance if some of this is a bit rambling – whenever I’m in hospital my brain turns to mush. That’s not Bed 3 above, of course, that’s my Clockwork Bed at home which, in terms of essential adjustability is vastly better than Bed 3.

If you’ve had the misfortune to be in hospital, you’ll know there is little to do but watch and listen to the passing show – particularly the interplay between patients and doctors – which, in my case, is The View From Bed 3.

You’ll quickly come to realise that the vast majority of patients are both scared shitless (yep, me too), and abysmally ignorant of all things medical (quite definitely not me too).

I check and double-check everything. I check my meds assiduously (I’ll come back to that), and I challenge whether procedures are essential or whether they want to do something because it’s what they always do, to no particular patient advantage (you’ll be surprised how often that happens), and if essential, is there a safer/less painful** option?

**After my admission last November my tolerance for pain is almost zero, so much did they inflict upon me via fucked-up i-vs.

None of that makes me popular, but I’m firmly convinced that I’m still alive because of it (covered in earlier posts from April 2013 on at Ron’s Rants).

And I’m also still alive because, as I said, I always check my meds assiduously, first to make sure I have the right drugs and, second, in the right quantity – and that’s where, in Ward 33, Arrowe Park Hospital last Friday (or it might have been Thursday, my first night, but the when doesn’t much matter), that policy paid off in spades.

I have heart failure (re-confirmed this week after APH’s concerted denial last year), along with a calcified and seriously stenotic aortic valve, not to mention the effects of COPD on my heart. I am, in fact, dying. Two doctors from different disciplines told me that. What I don’t know is how long I have but, as you’ll see, APH isn’t helping.

So, my heart condition is treated with a beta-blocker, Nebivolol. Initially, this was massively over-prescribed and drove me deep into tachycardia (at the right dose it has the opposite effect and slows my heart rate; brings down my BP too). It took me months, stopping the drug for a few days until it was thoroughly out of my system, then restarting it at 1.25mg twice a day. It should be one dose a day but some people, and I’m one of them, metabolise the drug rapidly, so half the daily dose at 12-hour intervals gets the job done.

I eventually got it up to 2.5mg every 12 hours, and there it remains. My BP, while not perfect (though diastolic is below 90 which I was told to aim for – that’s the relaxed phase of the heart’s cycle), is almost identical every time under normal circumstances, which is why I’m not entirely happy to have my meds tinkered with during a crisis.

In hospital it routinely comes in 5mg strips, scored into quarters so not hard to get the right dose. Hands up if you can guess how much Nebivolol I got in a single dose…

Bearing in mind that dispensing 2.5mg from a 5mg strip is hardly intellectually challenging, what I actually got that night was 20mg – 4 days worth of the drug in a single dose. Had I, like most patients, been a trusting soul and just chugged what I was given, I’d be dead. There is not, there can never be, any excuse for such lethal stupidity or carelessness on such a scale.

I took what I needed and kept the rest as evidence, and reported the matter to the next junior doctor to come and see me (I never did get to see a consultant). She shot off to make sure an incident report had been submitted. Never heard any more.

I also reported it to the ward Sister and everyone else with the slightest vestige of authority who was reckless enough to stop at my bed!

So, APH administration, I will not take down this post so don’t bother asking without a court order. And if you stopped trying to kill me I might be more charitable!

I accept that APH has saved my life twice now, in March last year, and last week, but they are massively let down by staff who are significantly undertrained or just plain stupid. Sadly, the dedicated person who sees nursing as a vocation, not just as a way of staying out of the dole queue, is increasingly in the minority.

Another medication problem. As soon as I was admitted I was give 100mg i-v bolus of Hydrocortisone to stabilise my Addison’s Disease (that was fine), and a shot of i-v Furosemide (Lasix for my readers in the colonies). The Furosemide – a diuretic – did nothing.

Up on the ward I insisted on switching to oral Furosemide – took four days for that to happen – and that had very little effect either.

Back home, and after my first dose this morning I’m peeing like a carthorse. The problem, then, isn’t with Furosemide per se, but with the hospital’s supply.

Anyway, fuckuppery aside, I found myself in the middle of a demarcation dispute between disciplines. The Respiratory wing was claiming that my lungs were the main problem (my own view is that my lungs – coughing blood and what felt like pints of evil, watery, sputum – were a symptom, and my heart was the cause. The Heart wing claimed my heart was the cause and going to kill me. In fact prior to that two A&E docs told me during admission, during 8 hours on a bloody trolley, when I was saying, increasingly angrily, “Find me a bed or send me home!” that if they did so I would surely die as my heart was shot to hell (I paraphrase slightly).

So I got together with the ward Sister – one of the few intelligent members of the staff – and went through my notes. Heart won the What’ll Kill Ron First contest by some margin.

But here’s a thing – and if you follow me on Twitter you’ve seen this already – on Thursday morning when I thought I was dying, I was terrified. Once I knew that for sure, however, the fear abated.

It came back again last night, facing bed on my own (everything that goes seriously wrong for me, healthwise, happens in bed), but sheer exhaustion got me past it, for an uneventful night and sound sleep.

Yesterday afternoon I was descended upon by a pair of junior docs, one from each discipline, and they explained in detail just how buggered my heart was (I knew – after all, I live with the thing – but it was good to have it confirmed). They’ve prescribed an ACE inhibitor, Ramipril, to bring my BP down. To be taken at night – the only reason I can think of for that is that it might push it down too far and precipitate a collapse if I’m active (ha!).

I have to eat more oily fish – no problem – and I also have to continue with the high-protein diet that I’ve been on since March last year, which I’m doing anyway as regular readers of Ron’s Rants will know. I’ve also been urged to drink more milk, for the protein content (so low it’s hardly worth bothering at 1.6%), and the calcium. I already have a 250g pot of Longley Farm full-fat  cottage cheese each day, which yields 10.3% protein but doesn’t list the calcium content, so I’ve asked them.

I also have a calcium supplement, which I’ve been told while in APH that I must not neglect while, at the same time, steadfastly avoiding telling me why (I suspect my Hydrocortisone causes calcium depletion).

And today I got my copy of my discharge notes. To say that they are a travesty of reality would be far too polite! And they’re from the same consultant who, in 2011, failed to record the fact that I’d been diagnosed with heart failure.

The notes play down the cardiology aspect, which pisses me off big-time as the junior cardiology doc who first came to talk to me went to great lengths to explain, in detail (it doesn’t matter how much you say you know what they’re talking about, just carry on – they treat everyone as if they’re dumb). So I got the detail, and sketches to show where it’s all going horribly wrong – all of it, in my notes, played down and reduced to “mild aortic narrowing”. Which is bullshit.

I’ve had enough echocardiograms now – about 5 or 6 – to be familiar with the noises the machine makes, and I asked the technician, a singularly humourless young woman (so I spared her my “I’ll take a DVD and two wallet-sized photos, please” merry quip!), if the noises had any diagnostic significance. “Absolutely, yes!”

So, I know where in the sequence the noises are generated by my aortic constriction, and where this used to have some sharp tones, it’s now mushy and dense, which is very much not good. What happens is that the combination of heart failure and valve narrowing (stenosis), means that not all the blood is ejected when the ventricle contacts, and splashes back, muddying the sound, and that’s what I was hearing. Either condition would do that, having both is worse.

And the junior doc had already drawn me a diagram showing me how – and this was new to me – the events in my left ventricle impair the functioning of all my other heart chambers, even to the extent of stopping my right atrium filling properly. This schematic, courtesy of Wikipedia, shows the circulation within and through the heart and, a bit of a rarity, also shows the aortic valve, which is hidden away deep within the heart and not always shown:-

 Click image to view full size, Back button to return

Anything that screws up that whole, complex, pumping mechanism cannot possibly be described as mild. And my discharge notes end with the comment that the writer has not seen my echo results so can have not the slightest idea whether my condition is mild or life-threatening or somewhere in between.

But let’s end on a high spot – the discharge notes state, quite clearly that my Oramorph should continue, that I can have up to 10ml, and that the actual dose should be adjusted to the pain level – which is what I do anyway. So that problem should be laid to rest once and for all.

No, let’s not end on that, let’s stick with fuck-ups. One of my inhalers has been reduced to 1 puff twice a day – utterly useless, especially with the piss-poor quality of generics, and they have screwed up my Hydrocortisone dose.

The notes also state I had “several days IV diuretics” – I did not. I had one i-v bolus as I said, and asked to be switched to oral. In the event that didn’t arrive until the day before discharge, so of the five days I was in there – not counting the day I spent in A&E – for three of them I had no diuretic at all.

In addition, they fail utterly to mention my heart failure, but the several doctors from cardiology who stopped by all discussed it. The department which generated my discharge notes, though, is also the department that screwed up big-time in 2011 by failing to record my heart failure diagnosis. This current omission either compounds the original error or is a cynical attempt to hide it.

Most dangerous of all, APH is a teaching hospital, and someone there is teaching complete bollocks about COPD. I keep running into junior doctors who tell me I can’t have COPD as I’ve never smoked. Utter garbage – there are many causes of COPD, smoking might well be the biggest cause, but it’s by no means alone. And regardless of what these clowns are being taught, 10 minutes online will disabuse them of the idea – if they have the wit to check and not just blindly accept everything they’re told, which I rather doubt.

And that, boys and girls, has been The View From Bed 3 – it’s fucking grim and studded with morons.