Coming to terms with heart failure…

I was planning to write about heart failure as I have about COPD (much of the COPD content here is derived from personal experience). However, I seem – not surprisingly – to be a little too close to the problem to generalise, so this is what I’ve managed to find out as it applies to me. Some of it will, hopefully, prove useful to others.

In the absence of any proper medical advice at all, I’ve been doing some research into heart failure (hf from here on in), and how it might affect me, especially my life expectancy. The British Heart Foundation has some excellent information on the subject of hf, which can be found on this page.

So, have I found out anything useful? Well, yes, I have discovered that it takes about three weeks to be able to consider, and write about, the subject unemotionally (ish!), at least in my case, and I’m pretty much  past the “Oh shit, I’m gonna die!” phase (though it can still sneak up on me late at night), it does seem that my hf is as bad as it gets, in terms of the stage I’m at (based on the New York Heart Association scores, it goes from Class1 – no symptoms at all, to Class 4, below. Note: The descriptions of the NYHA classes on this Wikipedia post are wrong. They are so abbreviated as to be useless.

According to the BHF’s excellent “An everyday guide to living with heart failure, which uses the NYHA rankings**,” I’m Class 4 based on this definition, which exactly describes my situation:-

Class 4 – Symptoms at rest

You become breathless even when you aren’t being particularly active – for example, when walking around at home or even when sitting down. You may find it difficult to look after yourself properly on your own – for example, you get too breathless when having a bath or shower. You may need to sleep sitting up because you get out of breath or cough when you lie down.

**There’s also a companion volume “Living with Heart Failure” on the same page, which covers much the same ground but in greater detail.

I certainly wasn’t that bad when I went into hospital, and my assumption is that either the pneumonia or empyema (probably the latter), further damaged my heart in some way.

Lying down is painful as, annoyingly, is sitting in front of my computer – I’m certain, not least because that’s where the pain is, that lung damage from the empyema is the likely culprit. In fact, it’s probably 50-50 whether my current breathlessness is caused by hf or by the fact that my lungs, pretty rubbish to begin with, have been further trashed by the pneumonia and empyema.  I can feel the air going in and out of my right lung, I’m getting nothing from my left at all.

If I can light a fire under my GP, though, it should be possible to find out what’s going on – with chest x-rays and another ECG. The hospital ECGs – 3 of them – would surely have been influenced by my respiratory problems. Unfortunately it’s clear that he has no interest in making a house call, and I’m not yet well enough to get to the surgery (the main worry being the risk of catching something else while I’m there).

I’ve also discovered, according to the BHF, that asking “how long have I got” is futile – everybody is different.** As I thought, though, making lifestyle changes is vital, and I’ve already switched from sea salt (which gives you more salt bang for your chloride buck than does table salt), to Lo Salt, which is two-thirds potassium chloride and is pretty vile. In addition, I’ve emptied out my salt mill and filled it with dried chillies, set for a fine grind, just to spike up my food a little.

**I don’t believe it. Statistics are collected for pretty much every medical condition and, somewhere, there must surely be a best guess for someone in my situation – and I doubt it’s a secret. Doctors are too fond of keeping information from patients lest it upsets them. I’m already bloody upset not knowing!

I really need to know if I have months or whatever (seems clear I have more than weeks, anyway, as I’ve already had week!) – it would benefit me immensely, psychologically, to be able to plan for whatever future I have. I’ve been living with the fear of the unknown for a month now – I’ve been able to put that behind me, mostly but, trust me, knowing has to be better!

Anyway, back to food, and if I have chips, sod it, all bets are off, and they’re getting the real thing – chips with pretend salt are an abomination!

I can also reduce my fat intake, and eat more vegetables. I can happily eat a bowl of broccoli – as long as I can have it with soy sauce, but the stuff is loaded with salt, and in an attempt to find out how high, I’ve just noticed that Kikkoman soy sauce has no nutritional information at all on the label – a breach of the law, surely? A low-salt version is available which has 43% less salt, but less than what? Oh, and it’s disgusting – all it tastes of is salt! So I’ll; stick to the normal version, and use less.

Hard to see how I can reduce my calorie intake on one meal a day – I probably need more food, not less!

I’ve found that beer – my one vice/pleasure – is a no-no, as my legs swell hugely because of the additional fluid. I don’t otherwise feel ill (and I seem to be immune to hangovers now!), but all that fluid must place a burden on my heart.

I’ve experimented with a bottle of wine, and just a pint or two to finish. That worked OK, but god, it was boring, so I’ve reconsidered and I’m sticking with beer, and sod the consequences.

I don’t, in the normal course of events, drink at home – a bottle of whisky, say, can easily last me a year, and of the six bottles of beer I bought around the end of  December, I still have three.

Giving up smoking isn’t an option – I’ve never smoked, though until the ban I’d spent my life being poisoned by others.

Exercise, while desirable, is out of the question – I sleep sitting up on the settee (I’ve not slept in a bed since January 25), with my legs raised on my computer chair adjusted to the right height, and even doing that makes me breathless.

I’ve been using my powerchair around the building, and it’s been pretty successful. On Wednesday, though, I took my rubbish out to the bin room on foot – big mistake, as it wiped me out for the rest of the day. I might get my weights out, though, which will enable me to get some upper-body exercise while sitting down. Got to be better than nothing.

Six years ago I worked out twice a day with a pair of 20lb dumbbells (took months to work up to that), but right now 5lb is a challenge. Still, it’s a place to start.

I do need to walk, or exercise my legs somehow, though, as it’s probably the only way I can move the fluid that’s pooling in my legs and feet (sometimes I can’t get my boots on again the next morning). Just pottering around the flat, the flexing of my boots sort of pumps the fluid out of my feet, but it has no effect on my legs though.

I am, of course, taking diuretics, but they are something else I need to talk to my GP about as the dose, 40mg, is inadequate, so I mostly take 80mg (which is allowed; 40mg twice a day).

I take a lot of supplements, partly to treat my ME/CFS (over the years I’ve come up with a range that actually works, based on the fact that if I don’t take them I have no energy and feel like shit – I’ve also rejected a lot as useless), and also to address deficiencies. One of my meds causes B6 deficiency, which messes with my serotonin levels and causes depression, another depletes my potassium levels (bad news with hf), so I supplement with both, and I take D3 because I don’t get out much so get almost no sunshine.

Unfortunately, since I got out of hospital I’ve been so preoccupied, and felt so crappy, and had to take so many drugs that my supplements have been neglected – but when I remember them the improvement is profound. I really have to find space for them in my meds schedule.

I’ve also stashed away an unopened pack of 100 30mg dihydrocodeine tabs – that’s my exit strategy when things become intolerable, i.e. if I should become totally unable to look after myself.

Don’t worry, I’m not suicidally depressed (been there, know what it feels like), and I’m not about to pull the plug, but I will not become a burden to myself or others – sooner or later  there’ll come a point when life simply isn’t worth the effort any longer, I think making plans to deal with that – to step out of this world with my dignity more or less intact – is eminently sensible. My life – My choice. I have no family to worry about.

HF need not be a death sentence, but I strongly suspect that if my useless  GP doesn’t get his arse in gear, it might well be!

Medication, for example, is non-existent. I told my GP that the consultant was about to prescribe Digoxin, so what did the bugger do? He gave me aspirin and that, according to the BHF – and if they don’t know, who the hell does? – aspirin makes severe hf worse.

There are 40-odd drugs, in 12 classes, prescribable in Britain for hf, and I get pretty much the only one likely to do me harm if you discount beta-blockers – you really couldn’t make it up.

I’ve written to him – twice – reminding him that I’m housebound and that we really need to get together and work out what meds are best for me. His response? Silence. He was in my building one day last week – he could have popped in for 5 minutes, but no – he just waved to me as he drove out of the car park – didn’t even wind down the window to ask if I was OK.

I also need to be monitoring the amount of fluid I’m taking in, in a normal day, and how much I’m excreting, so that an appropriate diuretic drug, and dose, can be worked out, because what I’m taking at present is, as I said, inadequate. Measuring my intake is easy, but as I also use my measuring equipment for bread-making, there’s no way I’m peeing in it! Again, this is something my GP should have in hand. And doesn’t.

One thing though – for a long time I’ve been complaining of what I’ve perceived as heart problems (arrhythmias, tachycardia, PVCs**). There’s also another problem where my heart appears to pause, then pick up again with a hell of a thump – like being punched in the chest. I can see this clearly in the heart trace on my pulse oximeter; there’s a brief flatline – a couple of seconds – then a pronounced spike as my heart kicks in again.

** Premature ventricular contractions

I saw that on the hospital’s BP display, which showed the same trace with the same intermittent flatline and spike, except at the time it was happening every 10-20 beats, not the usual once every 10 minutes or so – and the staff nurse (the speed freak, if you’ve read my earlier posts), flatly refused to see it (“oh, it’s just the machine…”), even though it was all too clear (maybe patients aren’t expected to be able to detect abnormalities – well tough shit, this one can, especially when it’s so obvious).

And that’s where things are for now, except for one improvement – I’ve managed to get some decent analgesia for the first time – well, pretty much ever (since I was struck by lightning in 1983, anyway, which fried my feet and trashed most of my joints).

While I was in hospital recently – this post and the two following – I was prescribed dihydrocodeine. I never got it, mark you, not until several days after I’d been discharged, when the consultant’s letter got to my GP – 60mg 4 times a day, the standard tablet, not the slow-release type (DHC Continus), that I’ve been taking for a few years, which have never really done much. Same total dose, too, 240mg a day, but for some reason far less effective.

The main advantage, of course, is that the normal tabs kick in faster than the slow-release, otherwise both types, in theory at least, deliver 10mg of DHC per hour. Doesn’t work that way for either, but although pain control with the normal tab is cyclical, overall it IS better.

Although, by normal standards, I still have a lot of pain, by my standards, I have a hell of a lot less. I take the DHC every 6 hours so by the end of that period, and until the next dose asserts itself, pain does rather stage a comeback. But consider – I have maybe 45 minutes of severe pain every six hours, instead of all bloody day and night. Come on – it’s no contest! And I do know the theory that DHC Continus should provide smoother, uninterrupted pain control but, for me, it simply doesn’t.

To sum up, it seems reasonably clear than I’m not going to die suddenly (though after stripping and remaking my bed, so that I can sleep sitting up, I sure as hell thought I was going to!), so it’s a matter of behaving sensibly (and employing someone to do my cleaning, bed-changing, etc), watching my diet, getting some effective hf medication, one way or another, and basically, seeing how things go.

Watch this space – my GP can’t avoid me for ever…