A bizarre letter from my cardiologist…

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:-

Click to read, Back to return. Personal details have been removed.

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 thatif 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.


12 thoughts on “A bizarre letter from my cardiologist…

  1. I would say, too, that his letter is a result of your letter of complaint.

    I don’t know if it’s possible or not, and I seriously doubt that it is, but if Mohammed can’t go to the mountain. . . Could the hospital deliver and collect the equipment needed for the tests?

    • With two of the tests – 24-hours ECG and overnight O2 monitoring, fairly easily I should think, though whether they’d do it given a 10 minute job in the hospital could grow into an hour, maybe more, and twice, when they could be seeing other patients, I doubt they would.

      And from his letter he still clearly wants to do at least one test (stress echocardiogram), I consider too dangerous, and for no real benefit. And no matter how hard I look at these tests, I can’t see that they’ll do anything for my immediate benefit.

      The mobile ECG is unlikely to show anything as I’m just not active enough, the overnight O2 level monitoring is unlikely to show anything I don’t already know (this is because I told him I wake up breathless in the night – with COPD and heart failure it would be a miracle if I didn’t.

      And he hasn’t addressed a major failure on his part – that of informed consent. I’m not getting any information from him to enable me to make a decision, especially about the stress echo, which actually is dangerous. I know what happens to my heart when it’s stressed, and it’s not something I want to have chemically induced. If it does go wrong there’s an inevitable time lag before the inducing drug can be neutralised – and that lag could kill me. I’m not willing to take that risk. On a treadmill they encourage you always to push that bit harder, so I have no confidence, with the chemical option, that if I need to have the test stopped, they’ll do so immediately.

      And reputable medical websites really do say, if it all goes wrong, at least you’re already in hospital. No consolation at all if I stroke out or die!

      In this paper http://www.cardiologyres.org/index.php/Cardiologyres/article/viewFile/133/146 which reviews the benefits of chemically-induced stress echo compared to ordinary echo and invasive angiography, 7 out of 64 people died (that’s way too high a proportion – an 11% mortality rate – and that’s within normal limits). Tests were carried out locally, as well, so would be valid for me.

      • Found alternative death rate figures of between 4 and 9 per thousand for chemical stress echo. Still too high

      • As he seems unable to understand the written word, could you ask him to phone you, so that you can explain it all to him verbally?

        • God no! Not least because I won’t remember it afterwards, or will wind up losing my temper, but mainly because I want everything in writing. And I think it’s pretty clear he’s not going to listen anyway.

          And it occurs to me that he’s looking at my heart condition in isolation – as with the handful for research papers I’ve looked at today that look at people with only heart disease because any other conditions would affect the results – and that’s dangerous, for me, at least. There’s a hell of a lot more wrong with me than “just” this, which adds extra layers of complexity and/or risk to any tests – something he seems incapable of grasping.

          And the figures here seem to make my argument for me – the test is simply too dangerous. Apart from the rest of the horror show “Dangerous events (life-threatening complications or side-effects requiring specific treatment and lasting more than 3 hours, or new hospital admission) occurred in 14 cases (1 every 210 tests)” That might not sound a lot, but it’s actually a pretty high risk.

  2. trouble these days is that when you have multiple conditions ,you have one doc for one, another for a 2nd condition and so on. even GPs who are supposed to be GENERAL practitioners still dont do what is necessary. that is treat the whole person, taking into consideration ALL their medical conditions. its impossible to get things right without doing so. i get fed up of reading on leaflets that you should not take this or that if you have that or this condition. or tell your doc if you suffer from….whatever.then when you do i get told “oh we dont take any notice of those ,its just the manufacturers who are covering themselves.” bull **** . there has to be something in the info .someone somewhere that has suffered from any or most of those side effects at some time or other.HE/SHE should damnwell know. they are the ones with your medical history there in front of them on a computer screen and can find out at the touch of a few keys what conditions you do have and what meds your already on. if they cant treat the whole when family docs in years gone by could do it WITHOUT THE AID OF A COMPUTER then why not?

    • For the stress echo, I’m supposed to avoid caffeine as that artificially drives up the heart rate. I have several drugs that do that too, but no suggestion they shouldn’t be taken – which isn’t an option anyway.

      OK, their effect isn’t dramatic, but in combination with the stressor chemicals who knows what might happen? I sure as hell don’t, and neither does he because the information just isn’t there.

      Nobody looks – because it’s just not feasible – at all the billions of possible multiple drug interactions, just at interacting pairs, and there’s a list of those in the back of the BNF. Taking into account the fact that the 15 drugs I’m already taking daily cause enough problems – so many that, without them, I strongly suspect my “ME” would go away – so what would happen with another two or more drugs injected into that chemical soup? Nobody knows. And I sure as hell have no intention of being a guinea-pig!

      As for my medical history, the hospital lost over 40 years worth of records about 1986, and I’ve no idea if they ever got them back. Pretty sure they didn’t, so I have no medical history before then, and that matters a hell of a lot, because it explains my COPD.

      The problem with the restrictions and side effect listed on the PIL is that, if it happened just once during the human test phase, it goes on the list whether the risk is real or not. So, in one respect, your GP has a point. In recent years reputable manufacturers have shown the number of occurrences per 1,000 patients, which is a good indicator of whether a risk is serious, or not worth worrying about. That should be compulsory, but it’s not.

      • i remember the Gp surgery records dept losing mine about 1986-7 time. i too have no way of knowing if they were ever found. they just blithely made new ones out as if i was a new patient. i had been attending that surgery since the age of 17 yrs. so 26 years of medical notes were lost then/. my son has recently been told his notes went missing during transit from one drs practice to another within the same area. and there was nothing in his notes about the Kyphosis he had been told he had or anything from before that time. that was earlier this year. hes 40. so all his lifes notes are gone.i thought that they had to keep paper notes as well as computer ones.in case of comp probs, viruses etc.

        • As far as I know, my GP still has all mine – they took up about 3 shelves til they archived them – must be a tea-chest full, easily.

          My problem is that the diagnosis for the precursors of my COPD are in the lost hospital notes, so as far as they’re concerned, I don’t have COPD!!!

          • and the patient must never be believed. my last hospital stay was nearly 5 years ago. for suspected heart attack. (was a warning. nothing showed up to prove i had had anything but that). they still insisted on giving me aspirin and clopidogrel even when i told them as an asthmatic i couldnt take aspirin. (oh the benefits outweigh the side effects i was told) 1 month down he line and i couldnt even walk 5 yards across a road. my breathing was so bad i thought i was dying. i stopped the aspirin from that day and have never had such a bad episode since.even with chest infections etc.now i think the clopidogrel is affecting my stomach as im getting bad indigestion in spite of lanzoprazole and gaviscon advance and was feeling tired all the time. (these are side effects it says on the leaflet.) i stopped taking it for 3 days. was almost back to normal but today i took the usual dose and my stomach was back to being damned uncomfortable. so i am stopping them again for a further 3 days to see what happens. if the indigestion goes then i know its that. incidentally the chemist is now dispensing my old brand of lansoprazole again so am back on that at double the strength i was on before so i should not be getting these probs now.

  3. HI Ron

    I’m amazed your not on O2, treatment of some kind! What kind of GP have you? Your COPD alone needs O2 therapy of some sort! As for the tests, take it from me, CVA’s are not NICE. I for one shall not be subjected to no more iffy procedures, being cabbaged twice, is enough.

    It appears to me, that you are being victimised, but no doubt, you are fully aware of this.

    Take care Ron.

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