I got the following letter from my cardio arsehole. It arrived yesterday, it’s dated May 10 and says it was printed May 18 – taken 19 days to get here! Why do I doubt that those dates are accurate?
He purports to be replying to mine of May7, but no apology for the delay at all, and he refers to items which were not in that letter, but in my letter of complaint.
(Note: Given the time it’s taken this letter to get to me, I might have been a tad premature with my complaint, but as I had heard nothing from Newall since March 7, I believe I had every right to be pissed off and, frankly, there is no excuse for a letter taking 8 days from dictation to printing, and another 19 days for it to get to me, it’s absurd.)
The fact is I could self-medicate more successfully than is being done right now, but I shouldn’t bloody have to.
As for the tests, he wants to measure my overnight O2 levels. That needs me to be at the hospital 2 days in succession, day 1 to collect the equipment, day 2 to return it, which isn’t possible. One trip might be doable; two in succession, very, very, unlikely.
A pity, because that might actually be beneficial – I’ve felt that I’d benefit from oxygen for some years now. I was referred to APH for assessment about 5 years ago, drove around the hospital site, couldn’t get closer than half a mile from my destination – not a prayer of being able to walk that far. Before I left the hospital, I phoned the clinic, explained the situation – they agreed parking was impossible – and went home. I never got another appointment, just a snotty note saying that as I hadn’t turned up, they assumed I had no interest. Nothing changes at APH, does it?
He wants me to undergo a drug-induced stress test which I consider dangerous and for which the received wisdom is “Oh well, if it all goes to hell, you’re already in hospital.” Bugger that!
There’s also a 24-hour mobile (ha!), ECG. That might yield something useful, but my enforced level of inactivity is such that it probably won’t – this also needs me to be there on two consecutive days – and we’re back to square one.
All this, and more, I’ve explained at great length, and in great detail, so he knows the answers to the question he puts to me in the letter, which makes me think he just taking the piss:-
The fact is, I’m housebound – I don’t know what part of that he is unable to grasp. What does he do with his other housebound patients? I can’t be the only one. True, I can – if I get there – using my powerchair, but away from the main pedestrian area of the hospital – where I’ll have to go for the O2 and mobile ECG tests – it’s pretty much a no-go area for wheelies.
I was there in 92-93, on my first scooter, and that had a circular, padded, bumper for bulling through heavy doors – I’ve not seen one with that feature since, and powerchairs certainly have nothing like that – if I can’t push open a door with my left hand I can’t get through it.
I cannot, in all honesty say give me a date, and I’ll be there – I have no way of knowing, until I wake up, whether I can easily make it as far as the bathroom to pee. Today I mostly haven’t been able to, so I couldn’t take my diuretics, which dramatically reduced the need.
As you can see, he wants me to tell him what he can do so I can guarantee being there but, as I’ve said
Any other hospital, I’d suggest making all the arrangements, and then admitting me for 2 or 3 days, whatever it takes, but not at Arrowe Park Hospital, never there and, anyway, beds are at a premium so it’d be unlikely they’d comply. They were closing wards when I was there in January last year – I doubt it’s got any better. The might stick me in the Obs ward, which I wouldn’t even consider – been there, it’s like a goddamn zoo.
So I don’t know where this is going. As far as I’m concerned, my complaint is still valid and still stands.
It seems clear to me that my letter of complaint generated the above letter, despite the bizarre chronology, and it’s this passage to which he is responding without actually referring, especially the section in bold:-
“Even without his tests – about the usefulness of which, to me, I am extremely dubious, even were I well enough to submit to them which I manifestly am not – there is plenty of scope for Dr. Newall to medicate my condition; he is, after all, a physician, not a surgeon, and according to your website that is exactly what he is supposed to do, and is failing utterly.”
It seems to me that Newall is simply assuming that all that’s wrong with me is this heart condition. Even were that true, it’s still enough to screw up my life. With everything else that’s wrong with me, I’m probably lucky to be alive.
For a given value of “lucky”.
And the bottom line, even if he arranges transport to get me to the hospital, I still can’t guarantee being available – doubtless he sees that as me being awkward but it’s a fact of life and has been for a long time. It’s not going to change just because he doesn’t like it.
And before someone says, well, you go to the pub, there’s a universe of difference between getting a shave, washing the bits that show/are smelly, a squirt of deodorant and clean clothes (and that can take 4 hours, ffs), and preparing for a hospital examination/tests. As there also is between sitting in a pub swilling beer and battling my way though hospital corridors full of doors designed to be bulled open by trolleys from either direction, and thus don’t have handles!
Anyway, it’s a couple of months since I’ve reliably been able to get to the pub – I didn’t go yesterday for example, and I won’t be going until I’m stable on this new drug. I think I’ve cracked it, but it might well have a cumulative effect and come back to bite me in the arse – we’ll see.
I’ve been reasonably stable today (Thursday). If that’s maintained until Monday, I’ll call it a win. No thanks to my GP who prescribed 50mg of Losartan, when the starting dose in heart failure is 12.5mg, increasing to 50mg in 4 weekly increments if tolerated.
I tried 50mg – I thought I was dying. I couldn’t wake up, and as a result slept through 4 alarms, missing my early morning meds, which screws up everything else for the rest of the day, nor could I stay awake during the day. That happened two days in succession, then I took matters into my own hands and cut the tablets in half – they’re scored. I’d have cut them in 4 but they’re oval and impossible to cut accurately, though if I had to I planned to grind a tab up with a mortar and pestle, make it up to 10g with powdered sugar, of which 2.5g would give me 12.5mg of the drug (I have a scale that weighs to 0.1g so that won’t be a problem).
The first day on 25mg, Wednesday, I was still very ill, but not as bad. Today, Thursday, I’ve been OK. There’s also the concomitant problem of having to juggle my potassium intake, with Losartan causing retention and four other drugs causing depletion, but I appear to be fine with 25mg Losartan and 100mg potassium – without the potassium, I’m very far from fine – somehow it extends the efficacy of Losartan’ without it it’s worn off by late afternoon.
It’s a bloody good job I know what I’m doing, because I have little doubt that had I been an average patient I’d be dead by now. As it is, after a year and a half of fuckuppery, I feel extremely fragile psychologically. It’d be so easy just to put an end to all this shit.