Chronicles of the Heart – Poor medical advice…

As I reported yesterday, I was told to reduce my diuretic intake. I said this:-

The doc also told me I should stop worrying about my fluid retention and reduce my diuretics. Er, no. I’m sorry, but even if my heart isn’t the cause, fluid retention on the scale I have it is bad news – it can’t just be ignored. Nor is it going to be.

Obviously, taking diuretics yesterday, when I was going to be out and about, wasn’t feasible (diuretic therapy is just one of the things that keeps me housebound – for much of the day I have to pee every 15-20 minutes).

I know that if I don’t take Furosemide (my diuretic), I go straight into my human sponge act, and yesterday was no exception – I gained 1.7kg.

Weight gain at that speed can only be fluid retention, and 1.7kg = 1.7 litres of liquid mostly, based on how tight my trousers are today, sloshing around my abdominal cavity.

And that’s my problem. Retained fluid will do me a lot of damage. It will, if neglected, impair the functioning of my bowels, stomach, even my lungs and heart. It will also bring about a return of my lymphoedema.

Last time, not only were my legs massively swollen, to the extent that I couldn’t wear trousers as they were too tight, they leaked prodigiously – at one point (calculated by weighing soaked dressings), I was losing 3 litres of lymphatic fluid a day from my right leg alone. In reality is was probably much more, as a lot of it simply leaked away on the floor – everywhere I stood I left a puddle, and the carpet still bears the stains.

When I was first prescribed Furosemide I lost over 19kg in the first week – that’s the sort of thing I’m looking at again if I don’t keep on top of it.

I WILL NOT GO BACK TO THAT SITUATION.

I intend to carry on taking Furosemide at the prescribed dose, 80mg every morning, but I reserve the right, based on my judgement (I am, after all, the one who has to live with this shit), to increase that dose by 40mg in the afternoon. If that means buying my own, then I shall do so.

I will not risk my health (ha!), or, ultimately, my life, by following what I perceive as bad advice because, hey, there’s more. I was also told to drastically reduce my beta-blocker dose as it was no longer needed for heart failure. However, it wasn’t prescribed for that, but for hypertension, and it does that very well. If I reduce it – and I know this from experience – it will not only cease to control my blood pressure, but it will plunge me into the dangerous territory of tachycardia. So that’s not going to happen either.

And bizarrely, the dose that’s been suggested is the dose the literature specifies for – oh, you guessed! – heart failure.

Seriously, is it any bloody surprise that I view doctors with an extremely jaundiced eye?

And I have to say, having had time to consider the matter, that I do not believe the claim that I don’t have heart failure, simply because nobody can explain how I can have all its symptoms without having the condition itself. As I keep saying, if it looks like a duck, walks like a duck, and quacks like a duck – it’s a fucking duck! It’s not a goddamned cocker spaniel!

Less than a month ago, people were queuing up to tell me how desperately ill I was, how easily I could die, because I had both left and right-side heart failure. And as I said yesterday, that is still the majority opinion.

I do accept that I have Stage 3 COPD – I can’t argue with the numbers – but that does not preclude the possibility that I also have heart failure – yet that seems to be the assumption.

And that assumption could kill me.

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