Chronicles of the Heart, Part 34…

This morning, with my heart banging and clattering like a broken sludge pump, and with me becoming increasingly distressed, I then, to make matters very much worse, had an asthma attack which, for me, manifests itself as a coughing fit!

For this I have an inadequate supply of codeine linctus – inadequate because without it I’ll cough until I either puke or pass out – or both, which is extremely dangerous. Coughing also puts a severe – and avoidable – strain on my heart.  Not that my GP gives a shit as he flatly refuses to prescribe enough.

So anyway, I took a dose and within minutes my heart had quietened down.

So why did codeine shut down, or at least modify, my heart’s malfunctioning? I simply don’t know, as apparently it shouldn’t have. Next time – and there will certainly be one, it’s a regular event – I’ll use my pulse ox to check on things like heart rate, strength, and regularity, as well as my oxygen level before I take the codeine linctus (and it’s just the linctus, tablets do nothing), and again afterwards.

On a different note, as of today, I am officially totally housebound. I haven’t been able to shop in person for a couple of weeks, it just makes me too ill, and last Thursday is likely to be that last time I go to the pub, too. That – if I continue – really is going to kill me. There’s also the problem that, for a couple of days afterwards, I can barely walk and in excruciating pain. I don’t know for sure why, though I have some ideas. And I’m heatily sick of falling,

The only way that status can change is if I become a full-time powerwheelie, something I’ve been resisting for longer than is really sensible. The big problem is reconfiguring my flat to allow me to do that indoors – I simply don’t have the strength to use my manual chair any longer. Christ, I barely have the strength to turn a tap on and off.

And now we come to my missing cardiologist.

In March I had to pull out of a bunch of tests that I just couldn’t deal with as I was too ill, plus a couple I felt were too risky. He was nice about it, and the very strong implication was that he’d try to accommodate me if I wanted to try again, so on March 15 I faxed him a letter explaining in detail the problems I have going anywhere not just hospital (here), and that appointments for late afternoon, requiring me to use the lift to get to an upper floor, in my chair, at the same time as thousands of  visitors were emptying out, simply wasn’t going to happen as it would be impossible. Ditto appointments early on consecutive days – once a week is about my limit, and not early.

That was over 7 weeks ago, since when I’ve heard absolutely bugger all, which given the fact that I’m dying, and need some fucking help, is about as unacceptable as it gets.

I wrote to him a few days ago, a somewhat revised and angrier version of this.

Still nothing. There is no doubt in my mind that I am being discriminated against by Arrowe Park Hospital, Wirral, because making allowances for the limitations forced upon my by illness and disability is just too much trouble.

Or maybe it’s the consultant who simply can’t be arsed. I really don’t know, but I do know that such discrimination is unlawful – something I intend to pursue, assuming his neglect doesn’t kill me, which it well might.

The statistics say I might have two years – that’s not a guarantee, it’s an average. A lot of people get less. I think I’m one of them.

I’m deteriorating rapidly. Over a week ago I recklessly vacuumed my kitchen floor, a space as vast as – ooh – a child’s bed! Next day I seriously thought I was dying.

Obviously I didn’t, but I was so ill I really should have been in hospital (not APH though, no way – bastards almost killed me once, last January, they don’t get a second try), and I still haven’t recovered. Not too long ago – weeks, not months – a few days rest would see me recover from overdoing it – now I don’t recover at all, and there is a remorseless downward slide as each crisis builds on the previous one.

This is not survivable.

Without intervention by the missing cardiologist – or another cardiologist, I really don’t care which at this stage – I seriously doubt I’ll see the summer out, never mind Christmas.

And yet there is no need for that. There are ample drugs available to treat my heart failure, over 40 of them, all it needs is the will to prescribe, to experiment, until we find a drug, or a combination, which treats my symptoms without also attacking me from another direction, or at least not so severely as my current drug.

Nothing, of course, is going to change the ultimate outcome, but there are drugs which will improve my heart’s functioning (Digoxin, for one, and I’m tempted to buy it myself), and some that might possibly give me a little longer. OK, that’s an outside chance, but it’s a hell of a sight better chance than doing absolutely nothing, which is what’s happening now.

But nobody is interested, not my GP, whom I haven’t seen for over a year, despite the fact that he is in this building at least once a week, often more, or, apparently, the cardiologist.

My GP, idiot that he is, has just sent me a summons to go for a Healthy Heart check-up despite the fact that A) I don’t have a healthy heart to check, and B) I’m bloody housebound – I don’t know what part of fucking housebound this useless son of a bitch doesn’t understand!

There is a very good chance, this summer, of my dying from simple, inexcusable, completely avoidable, medical neglect and that, in the 21st century simply beggars belief.

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19 thoughts on “Chronicles of the Heart, Part 34…

  1. Sorry to hear all of this Ron, it’s awful that you are being contiually let down by the medical professionals who should be helping you.

    Regarding buying Digoxin, I’d say go for it!

    Apples

    • Yeah, I am. It’s pretty dangerous, though, but so is the crap I’m taking. On the plus side, it’s cheap!

    • Nope – just me.

      The useless GP I can live with, as long as he keeps prescribing my meds – I’m just pissed off that he can’t be bothered and with his stupidity. As for the cardiologist it took a year to get to him – can’t afford to start the whole process again. I’ve got to get him involved again.

      As for the hospital – they really did try to kill me, that’s not hyperbole. I had pneumonia and empyema (the pleural sac fills up with puss and the lung can’t expand, which means the other can’t either so I had the lung capacity of a cat – as much fun as it sounds), and my lungs were also full of fluid, for which I was taking diuretics, and sometime during my second night, some lunatic plugged me into 2 litres of i-v saline. If I hadn’t woken up at 300ml and made them disconnect it – and that buggered my breathing even more – I have no doubt the full 2 litres would have killed me. I doubt “the doctor is a moron” would have appeared on my death certificate.

      They don’t get a second chance and, no, there’s not another hospital – well, there are two, but, of course, the patient has no say. They’re not going to take me to Liverpool or Chester when APH is only 5 minutes away.

      Ron.

      • Ever thought of making your way over to Liverpool and collapsing in front of the hospital? You’d need to make sure you had emergency medical information on you. I hate that you are going through all of this alone, it has to be very scary when you have a bad turn and are alone. It’s inexcusable that someone hooked you up to saline under the circumstances, that person should have lost their job and it should be put on their record. If I lived over there I’d pop in to see you every now and then! x

        • that person should have lost their job and it should be put on their record.

          It didn’t even go on my record! I was so pissed off I lodged an official complaint (waste of time), told the I was taking legal action and demanded unredacted copies of my records – which are absolutely abysmal – over 100 pages, from 4 days, which tell nobody anything, not even me, and I was there! They can’t be used to sue anyone, it’s my word against theirs, and they recorded almost nothing.

          On the ward, NOBODY got the right meds (I’d taken my own so I was mostly insulated from that). One guy, with the DTs, had been admitted wildly hallucinating – why he wasn’t on the psych ward I don’t know – and not once did he get his antihallucinogenics. He spent all his time arranging his own rehab care – hospital job surely? – just to get the hell out, I’m sure.

          I wrote this, half a dozen copies of which are in my hospital bag
          http://ronsrants.wordpress.com/2011/04/01/taking-your-own-drugs-in-hospital-is-a-right/

          I’ve since modified it to include information about the saline-mad fruitcake and a statement that nothing is to be done without my express permission (i.e. NOT when I’m asleep!). Come to think of it, it needs updating to include my heart problems.

          I’m not convinced the Royal, in Liverpool is a great deal better – that was where my ME was finally diagnosed, after 10 years. Within months they’d closed the ME clinic because “no-one dies of ME and we need the money”.

          Ron.

          • I carry with me a long list of the medication I take, but after reading your post will also add information on Fibromyalgia and especially recommendations in case of surgery. The last time I had hernia surgery and I lived in the States then, I suffered a major flare up coming around after surgery and the pain medication they where giving me wasn’t touching me. I was in ICU and had them call my surgeon telling them something wasn’t right, I’ve had several surgeries I know what I’m talking about; anyway he refused to increase pain meds saying it was normal it’s the drugs speaking. Needless to say the pain was so bad my heart freaked, I have PVST and had a major tachycardia attack; they called in heart specialist and brought down machine to do ultra sound of my heart, my heart rate was constantly monitored already being in ICU, took blood, urine etc. Anyway found Potassium and magnesium all but depleted so started replacing that all while my heart is racing 194 bpm my normal rate with medication is 63-64 bpm. Well this continued all evening through to next morning with me still in excruciating pain on top of it and looking like a dear caught in headlights as between pain and racing heart I thought my time was over, but that wasn’t good enough on top of all that I then had an anxiety attack that morning during nurses shift change. It makes you wonder if any hospital is any good with all the horror stories. I now insist my GP does a battery of blood work every 3 months so I can keep on top of things – God only knows what damage some of these meds are doing while helping other things. You should do the same even if every 6 months at the least. Glad to read in other post that you are feeling better :-) I take Diltiazem-angitil xl 240mg and Metoprolol 12.5mg for my heart – which works well for me.

            • I took Angitil for years – can’t take it with heart failure, though, no idea why, literature doesn’t say. I feel better when I take it, so dunno what the problem is – I’ll ask cardio numpty if he ever turns up!

              As for meds damage – I reckon if I subtract all the possible side effects from my lot, I don’t have ME at all. Of course, it’s equally possible it’s damage from the lightning strike, but apparently there’s no way to tell without an autopsy. Won’t bloody matter then!

              Cardio numpty did a load of blood tests in January – asked him what’s going on with those too.

              I think the reason hospitals are so crap is because nursing is no longer a vocation for those who genuinely care for the welfare of their fellows, but an alternative to unemployment for losers who would have been failed hairdressing apprentices a generation ago. The big mystery is how the hell they stay in nursing when they’re so goddamned useless.

              Ron.

              • My friend is a nurse and she complains all the time about the nurses on the job now a days not doing their jobs or giving a damn, she’s old school and really loves her job and helping people. She also often complains about GPs not prescribing needed medication. What a bloody mess the world is in, scary. Good to see you feeling better and cooking! :-) x

  2. Oh Ron, I read your words and I am going through similar to you, I dont have copd! I find it hard to breath, but, GP says its cos of my heart problems!!?? I also have ME/CFS, had it for years, and like you, cant do much, trying to make bed (duvet) kills me, picking up paper work which has fell off the bed (I live in my bedroom) upstairs and near toilet! My local hospital Queen Elizabeth woolwich, nearly killed me as well, and I refuse to go there. I cant take Statins as you must know, they add to ME pain in muscles, I get trobbing headache etc and just feel ten times worse. My GP says I either take them and put up with it or have heart attack and die!!!! I dont take them, take the daily asprin, bp tabs, but recently I have had so many pains in chest arms hands calf muscles, dizzy spells, my BP is still really high even though I take BP tablets, My GP said ‘phone the heart specialist” as he GP couldnt help me!!! I went back to him other day, (really hard to be able to get there) told him had hearing test and needed him to write to hospital to see ear specialist..He said OK, when I asked about my heart pains again, he said “come back next week)” he can only deal with one thing at a time!!!!!!!! I couldnt get my prescription, because machine was changing over to new system, so come back next day….He knows how hard it is for me to get out…..I was only saved the other day by my niece coming to see if I was ok….Id had enough…..She never comes here and I have no one, like you, You can at least write properly and intelligently, so ifyour getting nowhere, what hope have any of us got??????
    I think you should write to the Queen, see what she has to say :)
    I wish I could be with you cos I know just how fed up, in despair you are, Im sending you lots of cuddles, Surely someone must be able to HELP you with Hospital!!! Speak to your local MP, newspaper, have you?
    Christine x

    • Hi Christine,

      Yep, heart problems can screw up your breathing as much as COPD, maybe more because, of course, the usual meds don’t work.

      If you get chest pains, though, never mind your GP, dial 999, ambulance and paramedics will be there in minutes. I have no confidence in my hospital, but A&E are OK, most are.

      There is a condition in ME that mimics angina, called Syndrome X, which I had for years before I had heart problems. Has that been ruled out in your case?

      First of all, though, lose the duvet, they’re just too much – I find a fleece blanket between 2 sheets is warm enough – 2 fleece blankets maybe if your place is cold.

      Statins are a liability – 21st century snake oil prescribed for every damn thing under the sun – while they trash muscles, liver and kidneys. Sounds like your GP is a bigger idiot than mine – statins will not stop you having a heart attack. Best they can do is reduce the risk, but if they’re doing you more harm than good – as they did with me – then you need to decide whether they’re actually worth it. The muscle pains are statins breaking down your muscles, a condition call rhabdomyolisis, and it can do you a lot of harm. You should think very seriously about stopping them before they do real damage – and tell your doctor to stop being an idiot – you are NOT going to die just because you stop the statins.

      I brought my cholesterol down with a diet high in oats and soya protein; soya milk too. Not to everyone’s taste, but at least there are no side-effects.

      First thing after the holiday, contact the surgery and tell them that you are housebound, and that they need to put you on the housebound list. Arrange to have your meds delivered too, if you can.

      My MP is Frank Field and we don’t exactly see eye to eye, but I’m seriously considering putting all the Chronicles into a book, putting it on CD and sending it out to all the newspapers if I get no response soon.

      Take it easy, and try not to get wound up – stress is very bad for the heart. I might seem angry, but I’m not – it’s a luxury I can’t afford – but I can feign it well! ;)

      I can’t bend down well either, so I have a couple of reachers, a short one, about 2 feet, and one a metre long makes it easy to pick stuff up, even papers. A dust-pan and brush on long handles are better that dragging a heavy vacuum cleaner around too.

      If you need links for anything I’ve mentioned, let me know – some reachers, especially, are rubbish.

      Ron.

      • Thanks Ron, and Im glad your sounding a bit stronger:) What is syndrome x? never heard of it. Ive stopped taking statins, about 3 weeks ago after my GP put me on the 5th different statin, not even took my BP which I know is high.
        I have a reacher its a bit of apain sometimes its about metre long, where can I get a smaller one?
        I now have to go to Trubunal to try and get mobility, I have blue badge, disabled bay outside, but, they took away my mobility due to letter from my GP, which had one word sentence in replying to them about my condition, he was also on the tribunal chair, next door when I last had my appeal turned down!
        I have tried to get someone from independant disabilty to help me but afraid no one around. Even council run ones no help because they have no staff!!!!
        Anyone help? I live in Bexley Kent.

        Thanks again Ron, keep smiling :)
        Christine x

      • Hey Ron, what is Syndrome X? I was diaognosed with ME/CFS…at the Royal Free Hospital, Coppetts Wood. London about 18-20 years ago. HaD ALL SORTS OF DIETS ETC., then had weekly injections of …cant remember name at moment. Ggw?? years earlier I was sectioned,my parents signed. because I slept all the time, was in pain, and tried to kill myself…I had sleep treatment for ten days, 6 ECT’s, came out with weekly visits to pysho at local hospital, who just said hello, wrote prescription for Largateral, Mogadon etc.,, Modecate injection (had to go over to nurse) come back next week!!! I had ME!!! Still have…JUSTICE NHS ….I dont hoover for 6-9 months, I cant….makes me feel sick…sicker…..!!!??

        • Syndrome X, as I said, is an ME-related condition which mimics angina. I think it might be called something else these days, but pretty sure Syndrome X is still in the name.

  3. Ron,

    I can only repeat what others have already said and either change your GP or at the very least, arrange telephone consultation with him instead of visiting him. Of course I’m surmising that you can still converse verbably A-OK!

    I know where you’re coming from when you sated that he’s a useless bugger (perhaps he’s after a position at Atos!) because my choice of GP at my practice is dwindling too due to their incompetance and uncaring attitude.

    I knackered myself on Friday gone when I visited my GP in order to give him feedback to the latest dosage “increase” of the Morphine I’m prescribed. Actually it’s half the dosage that I’ve been taking for years but he ignored my concerns and went ahead with his ideal dosage. So when I saw him last Friday I told him so in no uncertain terms that he must get my meds sorted as I cannot keep visiting him every 2 – 4 weeks as it hammers me into the ground and it taking me far too long to recover from these excursions. So he has now suggesting that I arrange to have telephone consultations instead, though I think it’s more for his benefit than mine.

    As for hospitals?

    I came to the conclusion years ago that hospitals are the worse place to go to if you’re sick. I stopped going to my local hospital after 10 years of trying to have one operation done. Now it’s five ops and counting!

    I also found out just how ineffectual PALS is if you have any problems with a hospital and any of its staff – they’re bloody useless too!

    • PALs are a total waste of space – might as well toss the buggers out and install a juke box – it’d be more use!

      Surgery doesn’t do telephone consultations, and nor do I as I’m aphasic (nor are we allowed to use email, which would be perfect for me, and many others).

      My GP is much younger than me, I’ve known him since not long after he qualified, he knows I know more than him about what ails me (hell, I’ve had a lifetime to study, focused just on one subject, and a year to focus solidly on my heart problems – with the best will in the world, no GP can match that), and he really doesn’t appreciate it. Nor do I appreciate his doctor knows best bullshit – these days, when so many people are online, I don’t know how he hopes to get away with it.

      All I really need my GP for is to sign my scrips, and turn up in an emergency if I get something I can’t deal with, but it pisses me off that he’s in the building most days and can’t even give me a knock to make sure I’m still here – I need the damn cardiologist to actually stay alive! I could self-medicate – I will if I have to – but I shouldn’t have to at all. I already buy three essential drugs.

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