That should be the legend over the door to the A&E department, Arrowe Park Hospital, Wirral.
There are many versions of that quotation. However, I feel that this one best suits Dante’s original text “Lasciate ogne speranza, voi ch’intrate” and it’s the one I was taught by the best English master in the world, bar none. Argumentative pedants will be ignored. So there!
Monday night, after vomiting for 12 hours straight (a mystery in itself – nothing was going in, so where was it coming from?), I starting bringing up blood.
That got me an ambulance ride to the A&E at Arrowe Park Hospital.
Went through the usual routine – what’s wrong with you, what drugs are you taking, etc? When it came to ME/CFS, all I got was a blank look and a “What’s that?” from doctor and nurses alike. What the hell was that about?
Many members of the medical profession don’t accept that ME/CFS is a legitimate illness, but that’s a universe away from total ignorance (if such it was). There is just no excuse, and I was in no mood to be conducting ME101 for these losers. However, that affected the rest of my stay there – I have a feeling anyone claiming to have ME/CFS is written off as not to be taken too seriously – a potentially lethal attitude. Or maybe it’s more personal, which I’ll come to.
But, back on topic, I’d been admitted with a gastric bleed (and, Sod’s Law, by the time I got to the hospital, I’d stopped vomiting**). While they clearly been happier had I been barfing all over the floor, they did have the ambulance crew’s report, who had seen about 200ml of partially-digested blood in my bucket, yet I had the feeling they didn’t believe a word of what I, or they, was telling them.
**Like tooth-ache when you get to the dentist. Actually, having had, effectively, no meds at all that day – I lost what I’d managed to take – I’d taken advantage of a late-night lull in the barfing to get some meds into me, including PPIs.
Not being taken seriously is such a common occurrence for me at Arrowe Park, I’m starting to feel victimised (not that I spend much time there, but whenever I pitch up at A&E, everything goes belly up). In 1995, I wound up in the new admissions section of the coronary ward. In the course of the week or so I was there, every other new CHD suspect was given an echo cardiogram – except me. Eventually, I was told it had been angina (still leaving the question of why unanswered, and the enzyme test for confirming a coronary is known to throw up false negatives). However, it took me 6 months to recover from that “angina” and angina simply doesn’t work like that. I know, because of my respiratory problems, and high levels of activity despite that, I’ve been experiencing oxygen-debt angina for years (coronary muscles get starved of oxygen and go into spasm, reducing blood flow in the coronary arteries. Result – angina, which is relatively short-lived and goes away with rest).
I got so fed up with the universally dismissive attitude that, about 12 years ago I paid my tenner to access my files. Of course, they are allowed to remove any information that might “distress” the patient – presumably that includes anything that would terminally piss the patient off, too.
This state of affairs dates back to the eighties, when I experience serious bouts of tachycardia. Tony Blair had ONE bout, and was promptly admitted to hospital for a fix. I must have had hundreds of attacks over a period of 6 years. My GP, in the early days, said she had no idea what the problem was, and said my best bet was to call an ambulance whenever it happened.
I did this, but once A&E had established I wasn’t having a coronary, they lost interest (on one occasion my heart rate passed 280, and I passed out on the way there – unfortunately, that was in a car, not an ambulance, and by the time I’d hung around A&E for an hour or more, it had calmed down; despite a car full of witnesses, I was still met with disbelief). However, it kept happening, and I kept going back, until I realised it was totally futile. I believe, though, that at this time I was tagged as a hypochondriac, as since then nothing has been taken seriously. Despite the fact that if I genuinely was a hypochondriac, I’d be there pretty much every month or so – not, on average, about every 8 years.
And it’s not just A&E. After a bad fall my GP referred me to Orthopaedics at Arrowe Park, with torn knee ligaments (both lateral and medial collateral ligaments; the lateral still bleeds, five years on), in my left leg, and damage to the quad and patellar tendons in both in both legs. There is only one useful remedy for badly torn collateral ligaments – surgery. What I got was a referral to physio. Kids at the same clinic, with similar injuries for football, were routinely sent off for MRI scans (and yes, I do know how paranoid this is going to look, but trust me, it’s not).
I told the physiotherapist that I had severe ME/CFS, and when it came to exercises, I was very limited in what I could do. What happened? The physiotherapist tried to work a graded exercise routine into my knee exercises – the fact that they had nothing whatsoever to do with my knees was a bit of a giveaway! Not that it was actually possible for me to do ANY of the exercises at all. And even if I had been, several of them required two people.
I faxed the therapist, politely pointing out the unreality of expecting me to be able to perform remedial exercises designed for normally fit people and, by the way, wasn’t it just a little improper sneaking in a GET routine? Did you think I wouldn’t notice? I never got a second appointment. Or a denial.
I still can’t walk worth a damn, my quads are atrophied, and if I was foolish enough to kneel, I’d not be able to get up again.
The problem is that, especially with A&E, these pricks are putting my health, if not my life, in real danger. The only time I have had proper, effective, hospital treatment is when I’ve been I’ve been living somewhere else as a temporary resident, or when I was hauled off the Derbyshire hills to Stockport Infirmary – both places where my dodgy records couldn’t follow me.
The thing is, I know a lot about medicine (given my health, it’s been something of a hobby for many years), so I was able to give both the ambulance crew and A&E staff precise details of what had been going on, not just “Er, I’ve bin pukin’ like,”.
Hell, after I’d explained to the student paramedic, why vomited blood can be brown, or have the texture of ground coffee, which he didn’t know (why should I have to do that? – that should be among the basics – he though brown blood came up from the bowel, FFS), he asked what branch of medicine I was in. Not boasting, just pointing out that when it comes to telling medics what’s wrong with me, I don’t leave any room for doubt or misunderstanding. However, at APH A&E, medical knowledge in a patient ticks all the “Hypochondriac” boxes – and that mind–set is incredibly dangerous, not to mention incredibly stupid.
If someone arrives with a confirmed gastric bleed (confirmed by the ambulance crew and paramedics, who saw the blood in my bucket (both of them turned out – how’s that for a waste of resources?), the sensible course is a prompt gastroscopy, to find out what the hell is going on and, if possible, fix the problem. You don’t piss about for 5 hours waiting to see if a crisis develops.
What I got was a prostate exam, and a chest and bowel x-ray. A chest x-ray would show nothing I didn’t know already**, and I’m not sure what a bowel x–ray would show other than I was seriously constipated – a side–effect of several of my meds.
**With hindsight, they may have been checking the size of my heart, though a CT scan would have told them more.
OK, my prostate is fine, which is worth knowing, but that’s not what I was there for. I had the inescapable feeling that I’d become a box–ticking exercise – shall we do something that might actually be useful? No, lets to stuff that will get us brownie points with the DoH! Like a needless prostate exam – I almost said, mid–grope, “If you’re going to do that, you might at least have bought me dinner first!” but I doubt it would have been well received…
The A&E doc, Indian, and gorgeous enough to almost make it worth being ill, and a voice you just want to wake up next to, inserted an i–v line, and pumped in a couple of syringes of – something. I know there was an anti–emetic in there, but 24 hours later I gave birth to a 9lb dump! So there was clearly a purgative as well – it might have been useful for her to have told me that!
No! I didn’t weigh it! I was so shocked at the size I weighed myself, and I was 9lb lighter. Mercifully, that happened during one of two blackouts on Tuesday (and, again with hindsight, I should have got a doctor out, but I was mostly out of it and not thinking straight), because I’m damn sure I wouldn’t have enjoyed the experience, and I didn’t find it til much later. I must, somehow, have been on auto-pilot, which is worrying in itself, but which didn’t, apparently, include flushing skills. Not that it worked…
And if you’re feeling grossed-out, sorry, but that’s a seriously edited version. You really don’t want the full story.
I finally escaped at 05.30 Tuesday, having hung around waiting for my results, and then for a ride home. I was asked, about 04.30, if I’d be willing to take a taxi home. Well, no, having not believed me, the least they could bloody do was take me home again. Anyway, all I had was a few quid in change, enough to buy newspapers if I was kept in for a few days, which both I and the ambulance crew expected (I’d forgotten my wallet, which was empty anyway, though it did have my plastic).
Anyway, it’s now Thursday, and as the effects of the traumatic events of the Monday and Tuesday begin to fade. I’m starting to feel a little better. At least I’m dressed, for the first time this week, though getting bathed and shaved is still in the realms of the unattainable, for now, at least, as I’m still terribly weak.
At present I’m waiting for Sainsbury’s to deliver a consignment of bland foods – cottage cheese, lots of milk and cereals, crackers, rolls, cottage cheese, and as a treat, Chorley cakes and custard – oh, the excitement! Oat bran, too – I really don’t want constipation (caused by my pain meds), on THAT scale again, thank you very much. At the moment, though, I’m getting by quite well, pain wise, on Co-codamol but, then, I’m doing sod all.
Now, when things are starting to quiet down, my stomach hurts after meals. That is indicative of a duodenal ulcer, and it doesn’t take a genius to understand that it’s probably the source of the bleed. Hence my upcoming bland–fest. Even with PPIs, the now pretty much ignored Sippy Diet (named after it’s creator, not because you sip stuff, as even doctors seem to think), still has some value. Essentially, you eat small, bland, meals, 4-5 times a day, avoiding foods – and drink – that might cause irritation. So no booze, and very little tea and coffee.
And yes, as you might have guessed, I have a history of duodenal ulcers, going back to when I was 13, as a gastroscopy 30 years later showed, revealing a whole nest of old ulcer scars. That, too, I think, contributed to my perceived hypochondria shtick – how many teenagers have ulcers?
My GP, just to confound matters even more, is playing silly buggers. I managed to fax a repeat request on Monday, during the barf–fest, which should have been delivered yesterday at the latest. But when I was packing my meds case for hospital, among my old repeat lists (which I don’t actually use, and they know this), there was a note saying “You need to see doctor before your next prescription.” I think the note must be a month or so old, and I’ve had scrips since then, but I think they’re hanging on to this scrip until I chase it up.
If they are, they’ll regret it. I mean, I’m bloody house-bound, which is why I get my meds delivered in the first place. The only time I see my GP is when it’s an emergency that’s I can’t handle, which means I’ve seen him 4 times in about 7 years, when he’s been called out. Seems he’s too dumb to understand that.
So, understandably, right now, I am not well–disposed toward the medical profession in general, and my idiot GP in particular, and I have a real need to unload on someone. Guess who it’s going to be… I do not need more buggeration in my life right now.