Doctors putting me at risk again . . .

For those who missed earlier posts, I have bilateral Lymphoedema of the legs, caused by my heart problems, and which is seriously infected (called Cellulitis, the infectious organism is either a Staphylococcal or Streptococcal bacterium).

Neglected, this can kill me,** yet it seems someone at my GP practice, and I have a good idea who (the same pillock who prescribes my pain meds in 12-day quantities), is intent on screwing with my District Nurse-ordered  dressings. The nurse put in a prescription for 20 extra-absorbent, and large, Flivasorb *** pads – 2 boxes – to be delivered to me urgently.

**Is this what the APH consultant was talking about when he laid the “you’re dying” trip on me, but described it badly, as it was way outside his area of expertise (he’s a thoracic surgeon)? In which case, was his prognosis correct – am I actually dying? Buggered if I know!

***NB: The PDF document onscreen is badly scrambled, but will download OK if you use the Open with a different viewer button that should appear in your browser, then save as an Adobe Acrobat PDF file.

The prescription was reduced, without consultation with the nurses, or me, as regards usage, to 5 sheets. A day’s worth, and they’re now gone. It took most of the week to get them delivered from the supplier, and thence to me, so there isn’t a hope in hell of getting more for the weekend, or even tomorrow. What the fuck am I supposed to do then, you penny-pinching bastard?

I’ll readily concede that these items are expensive –in excess of £10 per sheet for the large ones I need to wrap my legs and it needs at least six to do the job properly, yet there is no viable alternative that would cost significantly less. No viable alternative at all, in fact, given that I am still losing about 2 to 3 litres a day from my legs and this is the only product that will cope with that volume of  exudate which is, effectively, toxic waste. This is why (source: Wounds UK, 2009, Vol 5, No 2). Notes marked ** or in parentheses are mine:-

Wound care provides many challenges but none more so than the management of high levels of exudate.** Chronic wound fluid can be damaging to the wound healing process giving an added problem.

**In my case this is up to 3 litres per day, mostly from my right leg.

Excessive exudate can bring misery to patients’ lives, involving:-

Soiling of clothing and bedding.

Malodour, which is distressing, socially embarrassing and inconvenient.

A contributory factor in malnutrition (that explains a lot!), which leads to

reduced appetite, protein deficiency.

Maceration and excoriation of the surrounding skin, which is painful and demoralising.

Reduced quality of life

Leg elevation which, while lessening exudate, also reduces mobility and increases discomfort

Dressings which absorb exudate may be bulky and heavy.

(Adderley, 2008)

So, given all that, and accepting – once more – the prospect that my life might really be in danger, I’m fully expecting this parsimonious twat to try to get me hospitalised to protect his budget. This would be Clatterbridge Hospital, not APH, as that’s where the Dermatology Dept. is. I do not, however, want to be in any hospital in the foreseeable future – I’ve served my time in hell.

Right now I have no idea which way this is going. All I know for sure is that I’m getting worse very quickly, and a doctor who sits on his hands like this is positively dangerous and, FFS, I’ve had enough of goddamned doctors putting me at risk over the past two years to last me whatever lifetime I might have left!

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18 thoughts on “Doctors putting me at risk again . . .

  1. You’ve get nought to lose so why not send your GP all your findings on actions and question him loudly, surely this goes against Medical ethics ?

    Stay Strong Ron xx

    • I have one thing to lose – he could dump me from his list, and a new GP is likely to mess with my meds, which would make life even more difficult. The nurse was going in yesterday to give him a kicking, so I’ll see what she says today.

  2. I know it can be a hassle but, I would be changing GPs I had no problem when I came back from the US with them prescribing the meds both my daughter and I take. Clearly the GP you have now does not have your health and care as his top priority.

    Hope things get better for you Ron xx

    • Things is, Bev, the pharmacy, right next door to the GP, delivers my meds when I need them – most others only deliver once a month (tried that,it doesn’t work for me). And I did change, once – got someone very much worse! And the trouble is, until it’s too late, you’ve no way of knowing how crap – or, if miracles happen, how good – a new GP is going to be.

      And I had another idiot when I first moved to Wirral. I’m prone to acid reflux, which can get into my lungs and, every time it does, the acid eats away a bit more lung tissue. I got the doc out after a bad bout, explained what had happened, and he said Oh, no, what’s happened is that you had an abscess in your lung and it’s burst. Stupid old bugger!

      • Hi Ron
        I fully understand your concerns about changing GP. I am very lucky with mine and don’t know what I will do if he ever leaves (some of the others at the surgery leave a lot to be desired and apppear to think their knowledge trumps that of my consultant).

        Leaving that aside you might have less trouble with meds delivery than you think. I found that most chemists are very good at delivering prescriptions if you have a valid reason for being unable to pick them up. If you can face phoning around you may be able to found one that is sympathetic to your requirements.

        It might also be worth checking whether your current pharmacy only covers your current GP surgery or several. For instance when I order my meds online I have to choose between no less than 15 surgeries, so my own pharmacy obviously covers a lot of practises. On the other hand I know that other pharmacies are sometimes attached to just one. My mum’s for instance only covers her own GP’s surgery. But it might still be worth checking. If they cover several then you would know that you have options should you need them without having to change your pharmacy as well.

        • Hi Sarah,

          There are three pharmacies that deliver locally, but all just do so monthly – and the current one just serves the one surgery. It’s too small to be any more ambitious – even now they can’t always cope. Doc’s ordered me some urgent meds that I should have had this afternoon – didn’t get them so it’s yet more stuff they don’t routinely carry. And as it’s Friday I won’t get them now until Monday.

          I used to have a great GP in the 80s (same practice). He’d load me up with enough drugs to stock a small pharmacy and just leave me to get on with it because he was happy I knew what I was doing. Then he left to go into admin, and it’s been downhill ever since, in the hands of Dr. Beancounter!

          Oh, and while the nurses are insistent that I spend at least part of the day in bed, the Doc today was vehemently against it as doing more harm than good – which is pretty much how I feel about it. Been there with my ME – just made me weaker. As I’m still weak form my latest adventures I don’t need anything getting in the way of my attempts to get back at least some of my strength. That’s one reason I ordered a new chair, for the exercise, seeing I can’t walk worth a damn.

          Yesterday I asked the nurses if being on my feet was good for my legs or not. Good, they said, so I spent a couple of hours clearing out the bedroom ready for the new bed on Monday – and my legs leaked like a broken faucet, when previously they’d been getting better, and I’m back to losing 2 or 3 litres a day. Not impressed – I have a feeling they haven’t got much of a clue. I even had to tell them how to construct a boot from dressing pads, so that the liquid is retained by the absorbent pads rather than running out on the floor. Even more annoying that I have to do it every damn day! It just doesn’t stick.

          They also want to get me into compression next week, when everything I’ve read says no compression while still leaking. Nurses say compression will stop the leaks – I say it’ll make them worse as the fluid will take the route of least resistance, aided by gravity.

          We’ll see. . .

          • I’m obviously far luckier with my chemist than I had previously realised! Their flexible delivery system has been a Godsend with my enormous prescription list and the fact that for some unknown reason some meds get given in sets of 28, others in monthly and others in weird amounts so that they always eventually get completely out of sync!
            Maybe the fact that I live in a biggish city has something to do with it, or maybe I just hit the jackpot.
            Sorry you’re dealing with lots of conflicting advice. I find in that situation you have to do exactly what you’re doing: do some reading yourself to make sure people aren’t doing anything stupid and then for less medical issues (eg should you lie down every day) simply find what works best for you. After all if there is no consensus it can’t be “wrong”!

            • I got an unannounced visit from one of the GPs yesterday, which worked out nicely in my favour.

              I’ve been having potassium permanganate soaks for my legs. The Tissue Viability Nurse said it should take 7-10 days to stop the leaks. It didn’t, but there was a visible improvement in both volume and appearance (swelling went down).

              Ten days and the lead nurse stopped the treatment. I pointed out that the advertised cure hadn’t happened and we should continue, but she flannelled about it being toxic (not as a topical application, and I take potassium to stabilise my heart, otherwise it’s hopelessly erratic; I know, though, that too much will kill me), and all sorts of horribleness would happen after 10 days!

              So I said OK, how do I contact the Tissue Viability Nurse to sort this out. Can’t, patients (or maybe just awkward sods like me), aren’t allowed to.

              Enter the doctor. We talked about my meds, and he added another diuretic – I might as well go and live in the bathroom, I’m already there every 15-20 minutes 😉 – and we kicked around the pot permang problem. He agreed with me that it suddenly turning toxic after 10 days was nonsense, and he’d talk to the TV Nurse about continuing it.

              The lead nurse won’t be happy, but I don’t care – they’re my legs at risk and, at worst, my life (it appears that this is what the consultant meant when he said I was dying – he just got it wrong – he’s a thoracic surgeon and Lymphoedema/Cellulitis is way out of his area**). Oh well, I’m no worse off than I was, and I still feel too well to be dying!

              ** I have excessively low levels of albumin caused by protein loss in the leaks, not excessively high as he said. Neglected, it could still see me off but ensuring an adequate protein intake will remedy the problem now I know about it. As will reducing the leaks as much as possible.

              I’ve also confirmed what I was told when I first arrived in Admitting – that the infection can poison my entire system (and major side effects are malnutitrion and protein deficiency – presumably because so much protein-rich fluid was simply running out of my legs). Explains the massive weight loss, at least, in addition to not eating towards the end.

              You know, there are times when I think I might be happier if I had no interest in medicine but, having said that, I’d probably be long dead now if not.

              • ive said this many times. because of my nurse training, i know far too much for my own good, which leads to being scared of having this procedure or that procedure done. but not enough about the things now happening to my body.,if i try to look it up i either get confused or get told by my daughter its worse thing i could do., in her eyes ignorance is bliss…and maybe shes right in some ways.lol.

  3. friend of mine having same trouble as you managed to find some absorbent pads she could use. to supplement the few she got through NHS. admitted she had to pay for those but apart from them she not only got them prescribed from her GP but also her hospital vascular clinic on top. worth asking about anyway.
    as for pharmacists delivery. mine also tried the delivery when THEY thought i should have them..in this case was 2 monthly. but i had nowhere to put the excess. and having a dog i was not going to just have them hanging around where he could get them. so i told them i would phone when i needed them. this works much better as my meds come in boxes of different amounts of tablets. some 28 some 30 some more than that. so one box is finished before others are. and i was landing up with more than i needed cos hadn’t even started on some boxes when next lot was delivered. my daughter landed up with a cupboard full of bags of her meds from same chemist. till she put a stop to it. its not just space needed either. its waste. cos eventually you land up with so many boxes that eventually will go out of date.

    • Hi Ron,i dont know which of your blogs it was in….about the hospital bed you had hoped to get…. just thought i would tell you,, it is still possible to get these. my bro in law has just had one delivered. a combined effort between district nurses, GP and social services. he too had been told he wouldnt be getting one. think it was then social services stepped in or rather his social worker. like you his legs are leaking etc.hes grossly overweight.over 30stone. and every time he starts a new regime to lose some, something else happens to stop him. last time was a leg ulcer just as he was all set to start swimming as a means. this time hes waiting for gastric band op doing, hes on the list for it. and his legs start weeping.and has to spend a lot of time with legs elevated. so very little exercise at all now. hes also going blind due to his bad type 1 diabetes. but at least its good news that hes got the bed now. chance for you yet. if its still needed of course.

  4. that is good news Ron, so pleased for you. now lets hope it helps. my bro in law apparently had best nights sleep in his that he has had in ages ,last night. he has sleep apnea and he and his partner have been sleeping on twin settees downstairs for months, he now has a mask to wear while he sleeps,for that.so the 2 things combined are doing good for him. they say sleep id the big healer so heres hoping..for booth of you.

  5. I have bi-lateral Primary Lymphoedema in both legs & I’m actually stunned at the haphazard inefficiency of your treatment! What WILL stop the Lymphorrhea is pressure. You need multilayer compression bandaging NOW. Even then you’ll leak for a while but it will end sooner. Just catching the leakage will do nothing to stop it happening. Once this episode is under control you need prophylactic penicillin to prevent further cellulitis & compression garments to wear daily. My local Lymphoedema service is based in a Hospice and they know WAY more about treatment that GPs & regular Nurses. You need a referral asap!

    • I’m stunned too, not to mention seriously pissed off (another blog post coming up). It took a month to get to see the Tissue Viability Nurse (should have happened before anything else, surely). Standards are haphazard too, with most being less than wonderful – it shouldn’t be my job to direct operations, which I’m having to increasingly. They’re not happy, but no way am I going to sit there silent and watch them cock it up!

      Finally, I’m being Dopplered on Tuesday and sorted for compression. Getting a profiling bed delivered tomorrow too. You’ve confirmed, though, what common sense dictates – compression will not, as promised, stop the leaks dead in their tracks, and I do wish people wouldn’t bullshit me when I’m going to find out for myself one way or another.

      There should be no problem getting a referral, as my Flivasorb pads are now on my GP’s tab, and at over a tenner each (minimum 4, maybe 6, a day), he had a panic attack! Referring me gets me off his tab and onto the hospital’s, which should cheer up the dismal beancounter.

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