Why I am so concerned about an accurate heart failure diagnosis…

Well, for a start it’s taken the hospital 18 years to admit that I have COPD, which first appeared in 1996 but which they’ve consistently denied even as late as last Winter, until three weeks ago, when I was admitted with pulmonary oedema. I am not going to put up with that level of medical incompetence ever again.

Let me be quite clear – I have no doubt whatsoever that I have heart failure. I am quite capable of reading and – more importantly – understanding, the literature on the subject and, of course, I have lived with the condition for 3 years since diagnosis (and probably much longer).

So, consider this. I was given a verbal diagnosis of heart failure in early 2011, while in hospital with pneumonia. This was – I know for a fact – recorded in the Staff Nurses’ records on the ward. It was she who told me about it when she was updating her notes.

It was not, however, recorded anywhere else. I have an allegedly unredacted copy of my records for that period, including nurses’ notes** – there is no sign of the diagnosis.

** Despite there being several different nurses involved, the notes are all in the same hand. Suspicious, much?

That does not mean it doesn’t exist. I was, for example, diagnosed with Addison’s Disease in March 2013, in the same hospital. I wasn’t told about that, and the information was tucked away in an obscure corner of my discharge notes, so my GP didn’t know, either, until I made the connection earlier this year and asked him for confirmation. Communication and recording of vital, life-changing, information seems not to be a priority.

The diagnosis of heart failure was subsequently confirmed by a cardiologist, in early 2012 and, more recently, just three weeks ago, by a cardio doc when I was admitted to APH with pulmonary oedema (a major, and life-threatening, symptom of heart failure).

This doctor spent some time at my bedside, explaining, with diagrams, how I was presenting with somewhat atypical heart failure (complicated by my COPD), in that it affects both the right and left sides of my heart (rather than the more common either one or the other).

Tip: Even if, like me, you already know what you’re being told, bite your tongue and don’t say so! It’s rarely well-received. You’d think doctors would appreciate well-informed patients but, on the whole, they don’t.

Then, just over a week ago, along comes the heart failure nurse, who admits that she is confused by my symptoms, and goes off to announce to the world that I do not have heart failure – an opinion based on nothing more than her failure to comprehend that it is perfectly possible for a patient to display symptoms of both left and right-sided heart failure.

Symptoms of left-side heart failure:-

Fatigue

Shortness of breath (dyspnoea)

Shortness of breath when lying down (orthopnea)

Paroxysmal (intermittent) nocturnal dyspnoea

Accumulation of fluid in the lungs (pulmonary oedema), frequently causing a person to cough up blood-tinged sputum

And

Symptoms of right-side heart failure:-

Swelling (oedema)

Dependent oedema (oedema that travels by gravity to the lowest portions of the body)

Enlargement or swelling of the liver (hepatomegaly)

Build-up of fluid in the abdominal cavity (ascites)

Oedema of the skin and soft tissues, causing swelling of the feet, ankles, and legs

Excessive urination at night caused by fluid redistribution while a person is sleeping lying down (nocturia)

I have all of these symptoms. The only one of which there is any doubt (as it hasn’t been checked), is liver enlargement (it feels uncomfortable, and there is a fair degree of pain, but that could be the ascites). The rest are present, and, except for fatigue, which is rather subjective, are demonstrable. They are not a matter of opinion, they are there for all to see.

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So, how long have I got?

Good question. The 50% survival rate for normal (i.e. either right OR left-sided), heart failure, with no other complicating factors, is 5 years from diagnosis (i.e. half of all those diagnosed will die within 5 years). This, of course, means that the deaths of the other 50% stretch – in theory – from immediately after diagnosis to whenever (with “whenever” being the average life expectancy for their socio-economic group).

Factor in everything else that’s wrong with me – and it’s a lot, see Footnote, below – and all bets are off – I could die today. There is simply no way of knowing, when I go to bed at night, whether I’ll still be here come morning.  I’m reasonably happy living alone, have done most of my life, but dying alone – that’s a whole different ball game. It terrifies me.

And there are times – last night was one – when I feel so desperately ill I seriously doubt that I’ll see another dawn. And yet here I am – and I still feel just as fucking awful as ever.

Thanks to the idiot nurse I have a cardiology appointment on Wednesday to try and sort this mess out. If I feel, then, as bad as I feel now, the chances of my being able to get there are somewhere between slim and none (though I have been offered a lift which will make things very much easier).

Finally, take today. I have to take diuretics. This, naturally, means I pee a lot. The bathroom is 6 yards away – today, that’s too far to walk every 15-20 minutes. I just can’t do it so I’m peeing in the bucket from my bedroom commode.

Why do I need diuretics?

I HAVE FUCKING HEART FAILURE!

***

Footnote:-

For new readers, this is what’s wrong with me – in chronological order of onset. I know I’ve published this list previously, but not everyone reads every post and it’s essential to this one.

***

Bronchiectasis and asthma since age two, when almost simultaneous whooping cough and measles trashed my lungs.

FMS since my late teens. Constant, bad/severe pain in shoulders/neck.

Spinal arthritis (cervical spine) since my 20s. Profound discomfort rather than pain, but that’s increasing, and the noise is deafening.

Osteoarthritis in left hip since age 32. Massively ramped up by being struck by lightning in 1983, now widespread (right hip, both knees, elbows, hands. Feet also very badly damaged (the fatty pads, in the soles, that cushion the bones were melted – my feet literally fried – so every step since has been like walking barefoot on a shingle beach). Pain can be extreme – it NEVER lets up.

M.E. since 1985 (Dx at RLUH 1996). Also a source of intransigent pain.

COPD since 1995/6 with onset of emphysema.

Heart failure. Dx in 2011, but never recorded on my file (of which I have an unredacted copy for that period). Subsequently confirmed by cardiologist, though non-cardio docs try to deny it. Motive? Dunno. Both COPD and the aortic valve problem (next), routinely cause heart failure.

Aortic valve calcification & stenosis. (Dx mid 2011). Currently defined as mild, this is progressive, so it won’t stay that way.

Angina, present sporadically since mid eighties. Getting worse. Oxygen-deficiency angina diagnosed at Stockport Infirmary, Summer of 1986 after Peak District rescue.

Bilateral Lymphoedema, present but asymptomatic since 2005. Last year severity was off the scale, massively infected (MRSA), and terrifyingly painful. While the infections have been cleared up (took over a week of i-v Vancomycin in November 2013), the pain remains. Right leg has large ulcer just above the ankle.

Left leg healed but fragile. Both very/extremely painful.

Addison’s Disease. March 2013, admitted to hospital close to death after months of diarrhoea, vomiting and starvation (lost 35kgs) – all, I now know, symptoms of Addison’s.

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