Chronicles of the Heart, Part 4…

As I mentioned in Part 3, the echo-cardiogram I was expecting has been downgraded to an ECG administered by a GP. That is unacceptable. What follows is a copy of my letter to my GP, in an attempt to address that problem, plus the problem of getting adequate analgesia. I’ll let you know what the outcome is – if any!

Note: APH is Arrowe Park Hospital, Wirral, and St. Cath’s is St. Catherine’s Hospital, Wirral

…

Dear Dr. Xxxxx

The affair of my heart failure seems to be degenerating further into farce, and a dangerous farce at that, from my perspective.

Last time I saw you, you were going to refer me to St. Cath’s for an echo-cardiogram. This, apparently, has been downgraded, I know not by whom, to an ECG, to be administered by a GP “with a special interest in cardiology”. Seems to me that could happen at Devaney. I’m certainly not minded to spend £10 in taxi fares on it.

Why is it that, right from the shambles at APH (still ongoing – I was promised unedited copies of all my records from my stay in APH; they have yet to arrive), no-one appears to be taking this seriously? Apart from me.

Still on the subject of heart failure, I have tried, on two occasions, to take Ramipril. It’s not possible. It seriously impairs my breathing, and triggers asthma attacks of a severity not experienced since childhood. These persist for days after stopping the drug, before fading away.

My legs and feet are massively swollen most days, which is extraordinarily painful, and my legs, from knees to ankles, are covered with large, fluid-filled, inflamed, blisters, also very painful.

In fact, partly due to the problem of fitting swollen, size 3 legs into a size 1 skin, my pain levels have increased horribly.

I’ve always had the feeling that nobody at Devaney has appreciated the degree of pain that I am in, on a daily basis, so let me explain, if I may. In June 1983, I was struck by lightning while hill-walking in North Wales. It, quite literally, fried my feet (melting the fatty pads in the soles, as well as melting my boot soles), and damaged most of my joints as well as, I believe, causing some CNS damage and being the cause of all the problems eventually diagnosed as ME. These problems, particularly pain, didn’t all occur at once, but built up over a couple of years** (after Drs Brace, Campling and Onion had spent ten years trying to convince me that I was either imagining my pain, or lying about it – which cost me my marriage when my wife chose to believe them rather than me and, ultimately, my sanity. And guess what – they thought I was lying/making THAT up, too).

**In the Spring of 1984, I backpacked the Pennine Way for the third time. By the autumn of 1985 I was starting to experience serious pain and increasing disability. A year later I was in a wheelchair.

There is not a moment in my life when I am not in severe pain, even if I’m just sitting, reading. It even breaks through into my dreams, generating amazingly violent dreams – my brain’s attempt to make sense of the pain. It never lets up. DHC moderates it somewhat, making it tolerable. Nothing else has any effect.

And there we have a problem. Co-codamol has never been much use, the recently increased dose being more than countered by increased pain levels, especially in my hips, knees and hands (and it is indicated for less severe pain than DHC). In fact, the first time I got even moderately effective pain management was after I left APH with a supply of DHC (as I’ve explained, this was more effective than DHC Continus). I don’t even get the constipation I get from codeine, with DHC, and it has zero effect on my breathing. To the best of my knowledge – and I do pay attention to these things – I get no side-effects of any consequence from DHC, which I can’t say for Co-codamol.

I know you were unhappy about DHC causing oedema, but as far as I can see in the literature (I write a medical (COPD) and disability blog – I’m very good at extracting information from medical websites, and my blog has brought me several plaudits from the medical profession – I mention this solely in an attempt to enable you to know me better – I am not your normal, uninformed patient), there does seem to be a risk of pleural oedema (though not all sources agree). However, since this has clearly not happened (and is treatable if it does), I feel that the risk is minimal, and I would much prefer to continue to take DHC than suffer the inadequacy of Co-codamol. As for its effects on “normal” oedema, not taking DHC for several weeks made no difference to mine other than it got worse.

In reality, I really need something better than DHC, but I’m not hopeful.

There’s another problem with Co-codamol, too. I’m prone to pretty bad headaches, but Paracetamol takes care of them, though not if it’s already in my system. DHC allows me to add Paracetamol (recommended at APH as routine), but with Co-codamol, obviously I can’t do that, so now I have a more or less perpetual headache to add to the list. This is intolerable.

It’s now three months since my original heart failure diagnosis and nothing is happening. I can’t even get the echo-cardiogram I was supposed to be getting. All I do get is ever-increasing pain and disability and I have to tell you, in all honesty, I’m getting very close to the edge here… And that’s not melodrama, I mean that, most sincerely. My life has come down to two seats – the chair it which I work at my computer, when I’m able, and the one in which I sleep. And that’s no life at all.

I need that echo-cardiogram, not least so that I might A) know exactly how ill I am (my guess, based on my symptoms, is very), and B), so that I might get treatment appropriate to my condition.

Yours sincerely,

Ronald W Graves.

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