Especially when it’s in the hands of a so-called expert who really isn’t.
As you might know by now, the person I’ve dubbed the Heart Failure Denial Nurse has announced to the world, based on no evidence whatsoever, that I do not have heart failure. I’m still awaiting, with bated breath, her idea of what, if not that, is actually killing me.
Part of her denial stems from my daily weight record – if I gain a kilo or more in a day or so, I’m in deep shit and supposed to notify my GP immediately – some weeks that would mean every day, as I can gain, shed, and regain well over a kilo in 24 hours (I weigh myself every morning before I get dressed). My normal clothes – boxers, trousers, T-shirt, socks – weigh exactly 1kg, which is deducted if I weigh myself later in the day.
Normally, common sense should tell her, this does not happen every day, otherwise I’d be a second Eric Pickles, and the world would tilt off its axis, and it hadn’t happened in several days, from which she concluded that it doesn’t happen at all.
Except that it does.
Yesterday I was 85.8kg. Today I’m 87.00 on the button. Puts me into the danger zone.
I know why it’s happened, too. Yesterday was one of those days when my tendency to retain fluid was greater than my diuretic’s ability to shed it. Today I hope to counter that by increasing my diuretic dose as, so far, since taking this morning’s 80mg of Furosemide, I have had one very small pee. I know I’m supposed to notify my GP but, really, what’s he going to do that I can’t do? Plus I doubt he actually cares that much. And it’s Saturday.
When my Addison’s was finally properly treated I offered him a copy of my steroid intake record as he was getting a bit paranoid about it – never got a reply to that so, basically, sod him.
And starting today I’m keeping a daily record of my blood pressure and oxygen levels (right now, sitting here more or less at rest – just typing – my O2 sat is at 91% and heart rate 66bpm; both too low, while my BP is fine at 115/70). When Denial Nurse took my BP the systolic pressure was 50 points higher, which put her into a tailspin. I pointed out that it was simply White Coat Syndrome (for some of us, no matter how accustomed we are to it, the simple act of having our BP checked drives it up, while doing it ourselves is fine).
By the way, did I mention that Denial Nurse, despite her alleged expert status, actually isn’t all that expert?
My pulse oximeter, like many others, shows a heart trace (at the bottom of the following pic). It doesn’t reveal much but it shows if the heart is beating normally or abnormally (and once I get into the supplied software it might provide more detailed info).
However, according to Denial Nurse, it’s not a heart trace at all! What is it then? No reply. The pic, by the way, doesn’t represent me, it’s just a demo screen.
Of course it’s fucking heart trace, a mini ECG if you like, and it shows exactly what I can feel. My heart occasionally stops for a few seconds, causing a choking sensation, before re-starting with a feeling like being punched in the chest (this has been going on since the mid 80s but no-one believes it** – I intend to use the 24-hour recording function, along with the software, to prove it once and for all). On my pulse ox this displays as a few seconds of flatline (the choking), followed by a huge spike – the “punch”.
**Sod’s Law, the one time I was fitted with a 24-hour monitor, it didn’t happen, but it doesn’t happen every day, just often enough to be worrying.
That this woman is issued with a pulse ox of her own, yet not know what one of the major functions does is deeply worrying – what the hell is the point? Hmm… Just checked, the model she’s been issued with just offers basic heart rate and O2 sats.** Explains her lack of knowledge, but not her obduracy when I explained it.
**The brand, Nonin, is flagged as the world’s biggest seller, This is because, like Dell and computers, their corporate sales are massive. That’s all. It doesn’t mean they’re the best, it just means they sell a lot.
Denial Nurse says that all my problems stem from my COPD, but as I said yesterday, that would mean my COPD is very much more advanced than it actually is.
I’ve lived with my respiratory condition – bronchiectasis and asthma – since the age of 2. At 8 years old I was on the same medication as my grandfather (lower dose, obviously), who had COPD, was on when he died two years earlier – just to give you an idea of its severity. In 1996 I showed the first signs of emphysema, and was upgraded to COPD.
I am, then, thoroughly familiar with everything my lungs can throw at me (though the severity of the recent pulmonary oedema was new and terrifying!), and I know that the symptoms that I believe originate in my heart actually do, and the pulse ox trace proves that.
Here endeth the lesson.
Well, almost. The drug my granddad and I had in common was ephedrine hydrochloride, and it was while I was taking this I first realised adults could screw up, big-time.
The ephedrine solution was, to my young eyes, pitch black. When, one day, my mother returned from the chemist with a bottle of yellow liquid I refused to have anything to do with it. A little later there was a frantic hammering on the door – Mr. Needham, the chemist, in a panic.
Ephedrine, it seems, was cut with lemon juice to titrate it to the appropriate strength. What he’d given my mother was a bottle of neat lemon juice. Bloody good job it wasn’t a bottle of neat ephedrine! As it so easily could have been. And that would have been more understandable as the colour, at least, would have been right – how a bottle of pee-coloured liquid could have been confused with one the colour of pitch baffles me to this day. And that, boys and girls, was the first time medical fuck-uppery had tried to kill me (even Needham didn’t know for sure, until he saw it, whether he’d given me neat ephedrine or not), and, as we know, they’re still at it.
Is it any wonder, then, that I prefer to trust my own knowledge, which I know is sound and up to date, rather than that of strangers?