I’ve been lied to about how ill I am, and what’s wrong with me . . .

While I was in hospital, my consultant told me that, because of heart failure, my body was flooding with albumin, to the detriment of my circulatory system and internal organs, and no matter what he did, I was going to die.

He lied. (Or, perhaps he’d claim that he was telling the truth, as everybody is going to die – sooner or later!)

Excessive albumin – hyperalbuminemia – is a genuine condition, caused primarily by dehydration, or by lack of vitamin A (or, presumably, both). The remedy is simple and obvious in both cases. There is absolutely no indication that it can prove irretrievably fatal, as I was told.

Nor can I find any association of hyperalbuminemia with heart failure, Given the vagaries of Google it might be hiding, but it didn’t even recognise the search term, and all I got from the British Heart Foundation website was a blank look – it doesn’t even have a single entry for hyperalbuminemia.

That there is something seriously wrong is self-evident – intellectually I’m a shadow of my former self, and physically I’m profoundly weak and very easily exhausted** – but just what the hell IS wrong with me, and is it really terminal?***

**I’ve regained perhaps 12kg in weight since coming home (I’d lost 31kg not the 25 I said elsewhere), but as close to zero muscle mass as makes no difference.

***Certainly feels terminal some days – one reason I haven’t checked it out before now.

That I was seriously dehydrated by the time I went into hospital is a given, what with vomiting, diarrhoea, and my legs leaking like broken faucets (as, indeed, they still are), but that’s very easily treated. It might be fatal in the Sahara, but not in suburban Wirral, FFS!

I know the consultant was trying to scare me into having a colonoscopy – he had a bee in his bonnet about colon cancer, which he was convinced I had (I don’t, as it turned out**), but how is telling someone they’re going to die even remotely effective? If I’m dying, why submit*** to the risks – which are legion – of a colonoscopy at all?

**So I was told, but as I’ve described previously, the colonoscopy was a fuckup and I have no idea if the results can be trusted, though the surgeon seemed content (though he might not have known how badly it went wrong). My bowels, however, are working just fine now, and there’s not, nor has there ever been, the slightest sign I might be harbouring bowel cancer.

*** I did allow myself to be talked into it, but by people who actually care about me and whose opinions I value, not the obsessive doctor.

I don’t doubt that, right now, I’m suffering from hyperalbuminemia. Between my diuretics and my legs I’m losing around 7 or 8 litres** a day (worst case – it fluctuates), almost impossible to compensate for by drinking.

**Arrived at by measuring my urine and weighing myself before and after my dressings had been changed.

Let me say that again – a consultant, a tutor in respiratory surgery, lied to me about my prognosis. Why – even in the maelstrom of incompetence that is  Arrowe Park Hospital – would he pull such a fuckwit stunt? Did he seriously think I’d never get the urge to check?

One final thought. A high-protein diet is detrimental in cases of hyperalbuminemia, yet I was urged by the medical team, and the dieticians, to always order the high-protein dishes from the menu.

For me, that confirms the lie.

But I still don’t know if I’m dying, and asking the consultant in whom I have zero faith to tell me would be futile. I couldn’t trust him to tell me the truth.

One thought on “I’ve been lied to about how ill I am, and what’s wrong with me . . .

  1. i despair of the medical profession now. of all professions in fact. nothing is as it was. nothing can be relied upon nor no one. having said that, just read an email from Michael Meacher MP which does give me a bit of heart. if he is right, and i have great respect for the man as he really does appear to be for those being oppressed etc these days. IF he is right. it looks like things are beginning to turn/ glimmer of light at end of tunnel etc.

    back to the NHS… young man, very early 40s, son of my best friend. been having problems with kidney stones. been in and out of hospital 3/4 times in the past 3 weeks in agony each time. each time they say will operate. then send him home with painkillers. this time hes gone yellow. was screaming in pain. had developed septicaemia. while in hospital. once again, yesterday, sent home with antibiotics & painkillers, in a great deal of pain……reason given this time? its bank holiday. (my language was not very ladylike when i was told that and knowing that in my day,, no way would a patient be sent home in that state “because it was bank holiday”.) sign of the times or what?

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