Screwed by the system…

Lymphoedema sucks, is painful and also dangerous. It could cost me a leg. Or two. Or it could kill me. And even if it does none of those things – well, except pain, that’s always present – it will still make my life insupportably miserable.

You’d think, then, there’d be a system in place to minimise the impact of this appalling condition on the patient. But you’d be wrong.

I need compression socks. The immediate reason for this is that lymphoedema produces “blisters”. They have a technical name – no idea what it is, but blisters is what they are. Most of the time they show as a flat, unpigmented, circular patch on the skin (mine do anyway), or they can be brown. And – of course they do! – they hurt.

Worse than that, without warning they can fill up with fluid, swell to the size of a pool ball, burst, and spend the next few years leaking prodigious quantities of lymphatic fluid and getting infected. Just one – and I had a whole crop at one point – but just one, on my right leg, leaked over 3 litres of fluid a day, every day, for almost 2 years. It is, I believe, just one of the reasons I almost died last year.

So, not unreasonably, I want to stop it happening again. I have a LOT of these blisters, dormant at the moment, and I want to keep it that way. What will help with this is knee-length compression socks. They’ll serve a double purpose, providing physical protection against the risk of them being abraded, and also preventing them from swelling and bursting. Who knows, maybe they might even reduce the pain! Can I have a prescription for them?

No I fucking can’t!

The reason I can’t is that I refused compression – except I didn’t. My legs have been compressed twice, and twice it caused a massive deterioration, the second time because they compressed a leg that was infected – WHICH YOU DO NOT EVER DO!  And the infection was probably MRSA, diagnosed not long afterwards.

I pointed that out, so then I couldn’t have a script because I hadn’t had my circulation checked. I haven’t done that because when my leg was like this:-

My leg, November 2013, APH

my vascular consultant wanted me to undergo an ultrasound circulation test on my legs that even the hospital warmed me was going to be painful and result in bruising – and that’s on a normal leg. On one like mine it would have punched holes in my flesh, because on large areas of it there was no skin.

I wrote to the consultant – the same clown who ordered me into compression with an infection – explaining in great detail why the test wasn’t going to happen (even now, it would be unbearably painful), and pointing out his error in ordering compression when I had an active infection. I never got a reply from the useless piece of shit. Not even a defence of the compression, which speaks volumes.

I did have a follow-up appointment with his nurse. I asked for late morning, they gave me 09.30. I told them it was impossible and, hey, on the day, it was. So I got dumped from the clinic. As all they had to offer was compression – and I have proven absolutely conclusively that this was the wrong approach – I wasn’t bothered.

Now, though, apparently I can be left without support socks, with all the associated dangers, because I complained about an improper procedure (infected compression), and refused a diagnostic test which would have harmed me.

Doesn’t that give you a warm glow?

It fucking infuriates me, and makes me wonder how much of a part my complaint about the nurses’ repeated failures to show up is also playing in this.

So if I want them, I have to buy them. Socks that are lymphoedema-specific will cost me £20 to £50 a pair. Flight socks are more affordable, at £14 a pair from Boots, who currently have them on offer, second pair half price.

The Boots web page is hedged about with caveats, but I’m confident I know what I’m doing here and, let’s face it, that confidence has served me well so far so I’m not about to be riddled with self-doubt now!

Watch this space…

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2 thoughts on “Screwed by the system…

  1. Lymphangiomas – that’s what the blisters are called. I have loads of them. Had them for over 20 years. Some are dark & almost leathery thickness, others have a mere gossamer thickness of skin which can burst if you even look at it funny. You do need compression to flatten them out but, if your legs are as large & deformed as mine, you won’t find anything off-the-shelf to fit and that can be dangerous if you get it wrong. Too small a garment will stop your circulation. To be honest Ron, I’m amazed at the amount of fiddling about that’s been getting done to your burst lymphangiomas. The tissue beneath is incredibly delicate and, as you know only too well, will leak and leak indefinitely if disturbed. What do I do when I have a leak? Clean the area & stick a hydrocollod dressing on it (Compeed are good for small bursts) and then I leave it for at least a week or until the dressing is ‘full’. I handle the area as little as possible; no soaking, so debriding – nothing. I know this is too late to change what’s currently going on with your leg, but it might be worth thinking about next time. There’s always a next time…

    On another note you are ENTITLED to made-to-measure hosiery regardless of anything that has happened before. You can be re-referred to the clinic. My Lymph Clinic is basically self-referral if they’ve seen you before, so that’s what I’d do first. Give them a call.

    • The current hydrocolloid caps – Comfeel or Duoderm, whatever they’ve got – would fill in minutes with the scale of my leaks (3 litres a day, arrived at by subtracting the weight of an unused dressing from the weight of a full one – one litre weighs one kilo), and that was just one leak on one leg. I don’t do small leaks! I did have one, once. I sterilised a coin, wrapped it in gauze, and bandaged it tightly onto the burst blister. It healed in a few days, but that was the only one that ever did. The rest were just too big – veritable gushers.

      At the moment I have the legs of a 10-year-old girl!, a year on from being so massively swollen I couldn’t get trousers on, so the worry is the flight socks might be too loose. Only one way to find out – I’ll have them on Thursday.

      And the consultant is a one-trick-pony – all he has to offer is compression and he screwed that up – I don’t want any more to do with him, especially as it’s impossible to get an appointment at a time I can keep.

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