Leg ulcer getting worse but treatment is still primitive…

This morning, in a discussion with the nurses about my deteriorating leg ulcer, all they can offer is compression – for which read MORE PAIN! Before they can do that they have to run an ultrasound test, and to do that they also have to check my lower leg blood pressure. And guess where the blood pressure cuff goes – yep, right on the ulcer. And that is just not going to happen.

At the moment I have a lightweight dressing on it, covered with two layers of very light tubular bandage. That, primarily, is sufficient to stop my leg swelling as well as keeping the dressing in place. It’s also staggeringly painful.

This morning I’ve take 90mg of Zomorph (sustained-release morphine), and as usual before a dressing change, 10ml Oramorph (liquid morphine containing 10mg of morphine per 5ml). Despite that the pain is excruciating and in an attempt to shut it down I’ve taken another 5ml of Oramorph. The result after 20 minutes? None at all.

Not surprising, as I know from past experience that it can take 30ml of Oramorph (60mg morphine), to shut down breakthrough pain of this severity. In fact, as I’m never free of severe pain, I don’t see how it can be classed as breakthrough at all. It’s more or less permanent.

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This is my ulcer, right now. On my screen (19”, aspect ratio 4:3), it displays as roughly life-size, which is 4.7cm by 5.2cm. It’s not as deep as it was, but it is spreading laterally.

This morning we got a swab result back from the hospital – they said it’s normal. What the hell does that mean? For me, its normal state is massively infected, and from the way it feels, and smells, it’s infected now.

I have life-long experience with infections. Primarily lung, but throughout last year also my leg, and I know what infections smell like, taste like (no, I’m not going to lick it!), and look like – this, to me, is infected.

The nurses could see how much pain I was in and still want to squash my ulcer under a BP cuff – and I simply will not permit that.

They said it’s the only location they can check my BP, so I asked them what if I’d had an amputation just above the point where the ulcer is? Surely, then, they’d have to find an alternative location?

Oh, that won’t happen, they said, they’d amputate at the knee. Which is rubbish. I’ve known two guys with mid/lower shin amputations, and there are a couple of paralympic athletes too, so it happens.

That aside, compression, in the second decade of the 21st century, borders on the mediaeval – there must be something else besides a tight bandage that causes extreme pain. I know how painful it is, I’ve been in compression three times already and three times it’s made my condition worse – there’s not going to be a fourth time.

The idea of compression is that it aids the function of the Calf Muscle Pump (CMP). Oxygenated blood flows into your muscles via arteries (yes, I know, Anatomy 101, but a surprising number of people don’t know how their body works), and out again via the veins – and that’s where it can go wrong. Arterial pressure pushes blood though to the veins at the lowest point in the body, but it’s not sufficient to push the blood, against gravity, back to the heart, and this is where muscles as pumps come into play, especially the CMP.

In the CMP, as the muscle works when you walk, squeezing the veins, pushing the blood up the leg (a system of valves then prevents it flowing back – unless the valves are buggered, and that’s where compression comes in, preventing backflow.

So far, so good, but everything I’ve read says that this only works if I’m able to walk – it’s the action of walking, flexing and relaxing the calf muscles, that powers the CMP – and I’m not (NB: 12.41, Friday, July 18 – the pain in my right calf is monstrous, and all I’m doing is sitting and typing).

The nurses argue that this is wrong, and just sitting around with my leg tightly bound will work. And that, ladies and gentlemen, comes under the heading of Total Bollocks. A muscular pump cannot possibly work if the muscles themselves aren’t moving. I accept that compression will stop the blood pooling in my lower leg – it’ll simply pool elsewhere.** That’s not the CMP working, that’s just bloody common sense.

**The light tubular bandage I mentioned, above, stops my calves swelling – my thighs swell instead!

Finally, and not for the first time – or, I suspect, the last – I raised the question of surgery. If my leg doesn’t work, and can’t be made to work, and all the medics have to offer me is even more pain, then screw it, I’d be better off without it.

Logically, a prosthesis will hurt less and, overall, I’d be less crippled than I am now. At the moment I can’t even use my powerchair to the degree I used to, as the jolting if I use it outdoors – roads and pavements in Wirral are a disgrace – is agonising. Even within the building, bumping over threshold plates has to be done very slowly for the same reason.

Amputate my foot and lower calf and those problems go away. A prosthesis will enable me to carry out those tasks for which I have to be on my feet (this morning I had a shave and a very cursory wash – it took over an hour, with rest/pain breaks and that’s something I can do maybe once a week if I’m lucky. A prosthesis should make standing less of an ordeal.

I do have a perching stool in the bathroom, but I don’t get on with it, partly because I can’t get close enough to the mirror to shave, and partly because it just doesn’t solve the pain problem.

The nurses, however, don’t want to discuss this beyond saying that a lot of patients feel the same way – not surprised. Surely, though, if there are a lot of us who feel this way, it’s better in the long term, for all concerned, to accede to our wishes?

Right now we are an unending drain on the Community Nurse service’s resources. A couple of weeks in hospital for amputation and recovery, a period of physio, and we’re off the books. Makes sense whichever way you look at it.

Will it happen? In your dreams…

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4 thoughts on “Leg ulcer getting worse but treatment is still primitive…

  1. Someone I know had his leg amputated above the knee. His was because of a severe knee injury (and a replacement didn’t fix things) and it improved his quality of life massively, though he still uses crutches and wheelchair. My worry for you is you wouldn’t survive the surgery- he’s a good few years younger and in relatively decent health in comparison.

    He doesn’t use his prosthesis much. Instead he is very balanced on one leg, which works for him. I wish I could balance as well on two legs 😛

    For washing, maybe a bowl in a bigger room (living room/bedroom?) might be easier, and shaving might be doable sitting down that way? It might help in the short term at least.

    • There’s a very good chance I wouldn’t survive the surgery, Danni – but that would also solve the problem. And no, I’m not being glib. Of course, given the risk there’s every chance it simply wouldn’t happen anyway so the question is probably academic – even 50 years ago I couldn’t find a dentist who’d give me a general.

      Tried using a bowl. It’s OK in hospital when there are nurses to fetch and carry, but I use crutches at home, so that’s out (plus there’s nowhere to put it – this place is a shoe-box). The ideal solution is a wheelchair-friendly flat but, like the shower, it keeps getting promised but never actually happens.

      By getting rid of some furniture this place could be made to work on wheels, except for the kitchen – I’d never get a chair in there even if all the surfaces were low-level – it’s just too small.

  2. Hi Ron

    In case it’s lonely blogging away, and not knowing if anybody is listening to you – I want to say please keep ranting and raging. (e.g “Do not go gentle …. but rage, rage rage….”)

    You are right about the war of attrition being waged by DWP against the disabled, sick, poor, unemployed, old … that’s just about everybody who is not rich …

    Sanctioning is indeed the weapon of choice, at present. Thank you for writing about it, when many people who are not in pain like you, are ignoring what is wrong in our country.

    You have many unknown well-wishers thinking of you, and regretting that they are unable to offer any practical help.

    Thank you for the detailed information about power chairs which I found by delving into your archive. Wish I had read it before I bought one! But as it was faulty I managed, with help of local Trading Standards, to get it taken back. I now know that they are not suitable for my local pavements.

    The misleading advertising of such products, and the price of most aids for the disabled, are topics many of us could (or have) written about in detail, but not as much a disgrace as the lack of adequate care and pain relief being provided to you.

    All I know of leg ulcers is that my aunt needed her dressings changed every day by her daughter to stop it getting any worse. My elderly neighbour did not want to make a fuss, and put up with the pain, and did not ask for more than a weekly visit from the nurse …. it got much worse.

    Hope you will be listened to, and given the care you know you need.

    With best wishes
    Pat

    • Hi Pat,

      Starting right at the end, the nurses tried to palm me off with long spells between visits – I wasn’t having it but they said they were short-staffed so we agreed they’d come alternate days and I’d change my dressings the rest of the time. Even doing that, this week it’s been bigger at every change – don’t know what the hell’s going on – and neither do they.

      The consultant I need has buggered off to Africa to do charity work – all very well, but the people who pay his salary – NHS patients like me – are left without care. My referral went in about 6 weeks ago, but by the time he gets back it’s going to be caught up in a massive backlog. I’ll be lucky if I get an appointment before next year.

      Nobody, though, should fret about being unable to provide any practical help – and that’s simply because there isn’t any. Even the nurses are limited in what they can do. If anyone cares to get in touch, though, they’d be very welcome – it is actually getting a bit lonely round here!

      For me the big problem is compression – it doesn’t work for me (I’ve just published a post explaining why) – yet that’s all they have to offer because nobody thinks outside the box. Compression is what they’ve always done and, unless anyone kicks them out of their rut, it’s all they’ll ever do.

      I think the problem with people not doing much about the current situation is that they fritter away their rage on Twitter, not on the streets. OK, mea culpa – I do too – but that, and this blog, is all I CAN do, and the same is true for a lot of people. There are many, though, who could be doing more and aren’t. And, of course, there are very many who don’t see it as their problem at all, failing utterly to comprehend that it could so very easily become their problem.

      I went from super-fit backpacker, rambler, and touring cyclist to wheelchair pilot in the space of a single year. It can happen to anybody.

      Ron.

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