My leg is a hell of a mess…

For anyone wanting to see what the new “wonder dressing” has done to my leg ulcer, click on Continue reading… to access the pic

If you don’t – and it’s not pleasant (it hasn’t been enhanced beyond a little lightening as it was too dark) – then don’t click.

I am, I confess, at a loss to know why the dressing – Hydrosorb – was so extremely painful, it’s supposed to be just an inert gel containing 60% water, which removes necrotic tissue. The mechanism by which it does this eludes me. I’ve scoured Google for anyone else having problems and have drawn a blank – which actually shouldn’t be possible. No product is perfect and there will always be a few complaints about anything, even if it’s simple user error. About Hydrosorb there is no criticism at all.

Next week I’m going to ask the nurses to supply me with sterile tweezers, as I think the best way to remove the necrotic tissue is manually, and I’m sure as hell not letting anyone else do that.

And, as the nurses keep turning up without dressings and using my emergency stash, the dressing I’ve just applied is my last one. If I want more, I’ll either have to assemble a large dressing from several smaller ones, or create my own. Either is doable but – and I keep saying this – I shouldn’t bloody well have to!

Ulcer1 Sept 20 2014

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8 thoughts on “My leg is a hell of a mess…

  1. Pingback: My leg is a hell of a mess… | Welfare, D...

  2. That does look unimaginably painful. So sorry to hear that you have more to deal with as result of this supposedly helpful dressing. I hope that you’re able to find some relief soon, one way or another.

    • I’ve reverted to the dressing I was using previously. Still painful – it goes with the territory – but luxury compared to this.

      This is the second time in 3 weeks that a highly-praised product has turned into a painful horror-show. Deeply unimpressed.

  3. I can most certainly empathise. I don’t have an ulcer [yet?] but have the bilateral lymphodema and cellulitis. Right shin has just ‘burst’ tonight, is leaking away [about 4 inches of the shin] and my wife has had to bandage it. I’ll see how it goes, but expectit to leak for days to come now and I’m never really sure what to do.
    The lymph nurse will probably just tell me to keep it clean and bind it tight… again!
    Hope you’ve got some good pain relief? That ulcer looks nasty.
    I think you told me on twitter once that I could ‘look forward to the pain’… or similar!! You weren’t wrong.
    Hope you get some improvement soon.
    Cheers
    Paul

    • Paul, you need a referral to the Community Nurse service ASAP. Trust me, you can’t manage this on a DIY basis – I tried for far too long (sanitary towels are very absorbent – not the type with wings, they just get in the way and have to be cut off). Community Nurses have access to far better dressings. Current favourite is Etuvit (Xupad is useless), and Flivasorb is superb. It’s also expensive, mine were costing £45 a day, every day, and my GP refused to pay, so I wound up as the guinea pig for Etuvit. Not as good but, at about the same cost as Xupad and far better, at least it’s affordable.

      The nurses will also check regularly for infections – essential as a simple infection can turn to septicaemia, and kill. I dodged that bullet – so far anyway – but did get MRSA which took 7 litres of i-v Vancomycin to knock down. And, I found out much later, almost killed me.

      As for pain the only thing I found that had any effect at all is morphine, and that just takes the edge off it. Lymphoedema pain truly is horrendous, and that pain carries on even when (if), it heals, presumably via nerve damage (lymphatic fluid is corrosive).

      If your fluid loss is measurable, you need a high-protein diet to make up for the losses (lymphatic fluid is largely protein).

      At its worst I was losing 3 litres of lymphatic fluid a day from my right leg alone (measured by weighing the used dressings 1litre = 1kg). leaving puddles behind me wherever I went. That sort of volume needs to be compensated for to avoid serious dehydration. Try Dioralyte. And lots of water.

      And if you haven’t already, check these guys out http://www.lymphoedema.org/ Not cheery reading but worthwhile.

      And depending on the degree of swelling and bulk of dressings, you might have to wear shorts. Might look eccentric but it does make life much easier. And don’t wear footwear you can’t afford to throw away – if it gets soaked in lymphatic fluid you’ll never get the smell out.

      And that’s about all I can think of for now.

      Oh, except that binding it tight doesn’t work – and could make it worse – think squeezing a sponge. If you block it in one place, it’ll break through somewhere else. What’s needed is absorbent dressings, changed daily, an aseptic procedure for dressing changes (easier for nurses than DIY), and time. It will stop, but there seems to be no way of forcing it to do so.

      Elevating the leg(s) is useful – I found it too painful so I devised a cradle to support my leg while not putting pressure anywhere that hurt, See here https://ronsrants.wordpress.com/2013/07/01/a-leg-support-for-use-in-lymphoedema/
      and here
      https://ronsrants.wordpress.com/2014/05/15/a-leg-support-for-use-in-lymphoedema-update/

      Ron.

    • It’s a popular misconception that dressing type plays a major part in ulcer healing and, of course, it’s not helped by extravagant claims by manufacturers. Basically, ulcers come in two types – those that will heal pretty much no matter what you do, and some dressings might possibly hasten that process – and those which will never heal no matter what you do. Mine is the latter.

      Then there are things which actively keep an ulcer from healing, like heart failure (me again), or damaged heart valves (check), because what causes ulcers, apart from lymphoedema, (check again), is a failure of the lymphatic fluid or blood circulation – or both (and again). So, I’m pretty much screwed.

      Then we have honey – but a look at the literature will show that’s a crock. First of all, most Manuka honey on sale is fake (http://www.foodnavigator-asia.com/Markets/Fake-honey-UK-manuka-sales-alone-outstrip-entire-global-production ). But even if the honey was genuine, it doesn’t work on ulcers. What honey is good for is infections. If an ulcer is infected, it might clear that up – or it might not. What it won’t do is fix the ulcer. Yes, I know there are reports of cures, but they doubtless fall into the former category, above.

      I had a series of infections last year. The last one, MRSA, damn near killed me and took 10 days in hospital and 7 litres of i-v Vancomycin to knock it down. Now I’m infection-free (swabbed only last week), but hey, I still have the ulcer! Just as I would with honey.

      Finally – and this might save you some work, looking at my Twitterfeed – I’m two years into this mess and I’ve actually done the research. There is nothing out there that will make the slightest difference. A leg ulcer isn’t amenable to very much at all. It responds to techniques that improve the circulation, but that’s pretty much it.** It also responds to amputation, but I’ve yet to find a co-operative surgeon, not least because I probably wouldn’t survive the surgery. I’ll risk it! They won’t.

      As I said, an ulcer will either heal or it won’t, and if it won’t there is nothing you can apply to it that will change that (all dressings do, assuming no infection, is mop up the corrosive crap that leaks from the ulcer). Not just my opinion, but that of the vascular surgeon and my nurses, who despite the occasional cock-up, have a huge amount of experience between them.

      **And if you’re wondering why that’s not happening to me, before it can happen they have to do an ultrasound check of the circulation in my leg. Part of that means applying a blood-pressure cuff to stop the flow and the only place that can go is right where the ulcer is and – trust me – that’s just not going to happen.

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