I do know the answer, but putting it like that leaves scope for people to post their own experiences in Comments. Please don’t be libellous!
I’m dying. Yes, I know, we all are but, statistically, I’ll be doing well to see 2013. In fact, the way I feel right now, I’ll be doing well to see the summer.
Last week, I made the first ever progress in the treatment of my terminal heart condition. It won’t change the outcome but, with care, I’ll feel a hell of a lot better while I’m getting there and, after the last few months, that’s worth a lot.
No medical personnel were involved in this at any level.
I finally worked out that what was wrong with me, at least in part, was potassium deficiency (Hypokalaemia) , causing my heart to malfunction wildly – a sensation not unlike that of a demented budgie thrashing around in my chest – and it wasn’t just subjective – I could see it on my pulse oximeter’s display – tachycardia, very weak heartbeat, PVCs all over the place – not a reassuring sight.
Until the penny finally dropped, , about potassium.
The thing is, this isn’t a new discovery, it’s something I’ve known about for at least three years, when I wrote this post on the subject of potassium deficiency and COPD.
The trouble is that life has been so deeply traumatic for the past year, and I’ve felt so ill, especially since January that just making it through to the next day never seemed all that certain (still doesn’t, frankly), and I’d forgotten all about it. Until last week, which I covered here.
Now, taking a low dose of potassium (50mg), I feel, if not well, then at least rather more stable.
Naturally, I’m very pleased at having figured this out, but I should have done so earlier – I had the knowledge, but it had been pushed into the background by the struggle of simply surviving (and if you think that’s melodramatic, you should see it from my perspective).
And, the question has been asked, by more than one person, why the hell have I had to figure this out myself. Good question.
Simple answer – because I had no choice.
I haven’t seen my GP since March 2011, despite the fact that I’m supposed to be on the housebound list which, I believe, gets me the occasional routine visit – except it hasn’t. In an act of major stupidity, they’ve even asked me to attend the surgery for a healthy heart check, when a look at my file would show them I don’t have a healthy heart, which renders the whole thing pointless, and I’m bloody housebound!
Likewise, I’ve not seen my cardiologist since January, and not heard from him since March 7, despite writing to him twice.
Between them, their neglect may yet encompass my death, because I really should not be put in the position of self-medicating a terminal condition.
Potassium is a tricky substance – too little can cause the heart to malfunction, too much can stop it – and me – dead. Now I have no idea how much I get from food, despite the availability of charts, it’s impossible to quantify, nor have I any way of measuring the depletion caused by my COPD meds, or the concentration caused by my heart drug. Which is why my supplementation is very precisely measured – it’s the only thing I have any control over.
Then, alongside simple neglect, there’s the more deliberate acts that simply beggar belief and make me wonder if some medical staff are not just mind-numbingly incompetent, but homicidal.
I’ve covered, at length, the unknown lunatic who plugged me into 2 litres of i-v saline in my sleep which, with my already flooded lungs, could easily have killed me had I not woken and made them remove it.
Then there was a more senior doctor a couple of days later who, had I not known he might well kill me, would have prescribed beta-blockers (not a happy combination with asthma;** they also conflict with the medication). He got extremely grumpy and slouched off. But, as he clearly hadn’t read my file, you might reasonably expect him to be happy he’d been stopped from possibly harming a patient – but no.
**What a lot of people forget is that, when long-term respiratory illness morphs into COPD with the onset of emphysema, the original conditions don’t go away, they’re still there. Like my asthma. It just gets harder to treat.
Then we had the consultant who, having discovered my heart failure, didn’t bother to record it, giving rise to the fuckuppery that’s still ongoing.
By the way, a commenter said a short while ago, “great blog, spoilt by profanity” – well, let me tell you something, dear girl, if you were me, you’d swear too, and sometimes profanity is the only adequate response. “Oh dear, it really isn’t right, you know,” just doesn’t get the job done – not when it’s the 24-carat, potentially fatal, clusterfuck that was my last stay in Arrowe Park. See this post and the two immediately following for the full, sorry, tale.
Then, this year, there are the tests I turned down, which appear to have sent my cardiologist off in a huff. Instead of sulking, though, he needs to go away and look up “Informed consent” for which the patient requires information upon which to base consent, or rejection.
One appointment letter asked me to attend for a “special echocardiogram”, during which “a tube might be inserted in your arm”. Seriously? Where is the information upon which to base my consent?
So off I went to the Internet, and it turned out that this was a treadmill stress test, and if I wasn’t able to use a treadmill (not a prayer), a drug would be injected to stimulate my heart and simulate the effects of exercise. Er, no thanks. The “tube” in my arm? No idea.
I know exactly what the effects of exercise are – they’re bloody dangerous. Just carrying shopping in from the car-park is sufficient to make me feel as if my heart’s about to explode, cripple my breathing** and either trigger an angina attack or cause me to pass out. Or both, which is why I now get all my shopping delivered. And I’m expected to submit to that being drug-induced? Never in a million years.
**A deeply weird and distressing sensation – I can breathe OK, the air goes in and out, it just doesn’t do me any good – I might as well be breathing for someone else.
He also got sniffy when I rejected catheterisation out of hand. The reason being that he wanted to pass a catheter – same initial procedure as an angiogram, see below – from my aorta, through the damaged and constricted valve, into the left ventricle, to see what was going on in there. Slight problem, which he didn’t bother to mention but I already knew – because I knew it would be a possibility at some point – the procedure carries a 24% risk of stroke. Even an angiogram isn’t as safe as they’d have you believe, and this is way more invasive.
I have an inbuilt aversion to any diagnostic procedure that carries a high risk, especially now, when we already know what’s wrong with me**, and rightly or wrongly I saw myself as a research project – and I sure as hell wasn’t about to take any risks if there was no benefit in it for me. Selfish? Damn right.
**The why really isn’t important. Knowing why I have heart failure won’t change the prognosis – I still have a short life expectancy, which is risk enough. I don’t need more.
The cardiologist, at the time of writing, has completely disappeared. I’ve heard nothing from him since March 7, despite writing to him twice.
I have explained to him, at great length, the difficulties I have in keeping appointments, and the very limited window of opportunity I have for doing so, and why. The fact that neither the cardiologist nor the Arrowe Park Hospital appear to have any intention of even attempting to accommodate my disabilities puts them in clear breach of the Equality Act and whatever might still remain of the DDA – something I pointed out in my last letter, which was also ignored.
Stupidity and unacceptable behaviour isn’t limited to APH, though. The Royal Liverpool University Hospital has its share.
I had an angiogram there in 1996, with yet another numbnuts consultant (for those of you who have missed out on this, they insert a catheter into the femoral artery in your groin, push it up to your heart, and inject a contrast medium which shows the blood flow, or otherwise, in the coronary arteries). The part of this that scares the shit out of me is the potential for dislodging crap from the lining of the arteries, which could then potentially cause either a stroke or a potentially fatal pulmonary embolism. The official attitude – you’re already in hospital, which is the best place to be if it does happen – sucks, big-time.
In the middle of mine, the consultant couldn’t find one of my coronary arteries. After a few minutes rummaging around, he decided to flood the aorta with contrast medium, in the hope that it’d find its way into the elusive artery (since so much contrast medium would prevent blood from conveying oxygen to my heart for at least several minutes made this idea seem less than desirable), and told the tech to prepare it. Which he did. Then – he found the artery, leaving the tech with a huge syringe full of contrast medium that had to be thrown away – then they all got into an argument about who was going to pay for it – all this while I’m lying on the table with a bloody tube in my heart!
This, as I said, was at the Royal, in Liverpool, and those familiar with it will know just who I’m talking about here, and I have absolutely no intention of letting the bastard anywhere near me ever again.
Back at Arrowe Park Hospital, though, it never fails in its incompetence, and I have to wonder just how many lives they screw up in the course of a year, as I doubt that the save all their imbecility for me, though it sure as hell feels that way.
A few years ago, at a routine eye test, the ophthalmologist looked deep into my eyes – and panicked! Before I know it I was at the eye clinic at Arrowe Park. After what seemed like hours of buggering about and looking at flashing lights, and peered at a very close quarters by a guy with breath like an open grave, the consultant announced that the vitreous fluid in my eyes was hardening and fissuring, and while doing so it was tearing my retinas. Is there anything to be done, I asked, “Avoid bungee-jumping,” said the smart-arse consultant – I was in my wheelchair.
Sadly, you’re not allowed to thump these arsewipes, though outside their safe haven such an attitude would doubtless get them a well-deserved kicking.
I’ve since discovered that this condition will eventually cause blindness. The only upside is that I’m unlikely to live long enough for that to happen, because it’s clear that Arrowe Park aren’t going to offer any treatment.
I have to say that all this incompetence, stupidity and potentially lethal carelessness has happened since I moved to Wirral in 1984, and fell into the clutches of Arrowe Park Hospital, which seems to specialise in employing useless bastards.
I’ll leave out the horrific decade from 1985 to 1995, when I was trying to find out what had made me so extremely ill, when every bloody doctor I saw tried to convince me I was mentally ill, a hypochondriac, or simply lying.
Eventually I got a diagnosis of ME, but I’ve since come to believe that the real culprit was being struck by lightning in 1983 – the long-term effects of which are similar to ME. See this post for details.
Prior to that I had a long relationship with very many doctors, at half a dozen hospitals throughout my life, but nowhere has even come close to matching Arrowe Park Hospital for sheer, bloody-minded incompetence and plain, old-fashioned, stupidity.
That’s not to say that hospitals in Liverpool and Bootle were perfect – far from it – but none made such consistent attempts on my health and safety – hell, on my very life, as Arrowe Park Hospital. (One of the first things they did was lose 40 years worth of medical records.)
And I’m starting to take this very goddamned personally!