An image from the past…

I was poking about in the photos on my Galaxy S3, couldn’t find the one I wanted, but I stumbled upon this that I’d totally forgotten about (warning, gross! – don’t click for the bigger version if that bothers you).

My leg, August 2013, APH

Click pic to view full size, Back button to return.

I took the pic in APH in August** last year – then apparently blanked it because it’s so horrendous.

**Actually, this was November. In August I was admitted to APH unconscious, without even my phone. This was how my legs were when APH decided Aquacel Ag silver-impregnated dressings. Those, and my hard work – see comments – are the reasons for the improvement you see below.

This was another occasion the second time APH were on the way to fixing my legs (pic is at the change of the first dressing), but again, the nurses wouldn’t follow through, and insisted on doing their own thing. They also lied to me and said the consultant hadn’t contacted them about my treatment – found out last week he had!

It’s odd – APH manage to screw up every bloody thing they touch, except my legs!

Anyway, this is today’s pic. The previous scabs have been shed, but as you can see the lesions are clean and healthy, and I’m happy with that.

Jan 23 2014 still improving

And looking at how bad it was just a relatively short time ago, I really shouldn’t b

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7 thoughts on “An image from the past…

  1. What a huge difference! You’ve done a really fantastic job on them Ron, considering you had so much hassle from your nurses on the district. OK, as you say, APH usually bugger up everything, but you are right about them getting it right about your legs. It’s just a damn pity that it had to take so long before getting the proper treatment and having to suffer such agony. It’s also a crime that your nurses didn’t take any notice of what they were told by APH and yourself.
    Jay xx

    • More painful than you could ever believe. At it’s worst, just having cream applied would make me scream in agony, despite being full of morphine. And that was just the touch of the cream itself, not their hand. I’ve read that lymphoedema is the worst pain anyone can experience. That it’s way worse than a coronary I know for sure! The tiny lesions I have left are still causing sufficient pain to need added Oramorph some days, though mostly base-level morphine (60mg every 12 hours), shuts it down now.

      The cause? This: http://www.lymphoedema.org/Menu4/1How%20to%20recognise%20lymphoedema.asp Plus massive infection, including MRSA. Warning: pics on that page are not fun. I was somewhere between Pics 3 and 4 a year ago, and leaking three litres of lymphatic fluid a day just from my right leg – if I stood in one place for a few minutes, I’d be standing in a puddle. Now I’m exactly at 5a and 5b, but with the small lesions still remaining – for now.

  2. That’s an amazing improvement. Maybe your photos ought to be shown to the nurses who attend you? Perhaps you could get a large poster made for their office or tea room, with some captions mentioning all you had to go through and do yourself to get them to this improved state?

    That first picture is horrific Ron. I cannot imagine how painful that leg was. It must have been really frightening to have that going on and also having to fight to get some good care.

    This is what drives me senseless with the NHS. You have to fight at the time when you are least able to fight strongly and fighting depletes the energy you have left for coping with your condition.

    Here’s to Ron getting mobile and out n’ about again!

    Best wishes
    Lucy

    • Hi Lucy,

      The scary thing is that I’d totally blocked that image (and it wasn’t August, it was November). In August I was hauled into APH unconscious with a temp of 41C – didn’t even have my phone, so it had to be November, the day I was discharged when they changed the first dressing before I left. The nurse was called away so I took off the old dressing myself and found – that. Snapped a pic and promptly erased it from my mind. Looking at it again I still can’t remember it.

      When I got out I was 90% responsible for my own dressing changes, taking off the old one, disinfecting, washing, and debriding my legs. The hospital were adamant – dead skin had to come off as it fed the infections, which is what I’d always argued with the nurses – they disagreed and just covered up most of it again.

      Once I started removing every loose scrap – as long as it didn’t bleed, it came off – I started to improve and from that mess to what you see today took less than 3 months of brutally hard work and pain – though not as much pain as the nurses would have inflicted on me!

      And, while in the hospital, 3.5 litres of i-v antibiotics, over the course of 10 days; a hamfisted process that cost me every usable vein, to knock out the MRSA. I went in there with a fairly normal aversion to needles, and came out with a full-blown needle phobia.

      Ron.

  3. Y’see Ron, in my ideal fantasy world, situations where a patient has done the work and managed to get a good healing outcome should be the moment when the lax professionals say “oh hang on a minute that Ron bloke has done something amazing, maybe we could learn something here from him?”

    But that’s my dream world not reality damnit!

    You won’t be the first person who has your condition and it didn’t respond to their standard, tick box ministerings. You won’t be the last. But they ought to recognise a success when they see it and learn from it, even if it isn’t their success.

    …..and since when did keeping manky, dead skin bandaged tight onto the infected weeping, skin beneath it become the default method of dealing with anything except global sepsis, amputation and er, death?

    They really need a smack. A hard one too.

    Grrrr from
    Lucy 🙂

    • I entirely agree. The thing that pisses me off is that three times the hospital have come up with a fix, and three times the nurses have just ignored it. By the third time I knew enough to know they are obsessed with compression, can’t see beyond it, are mostly spouting bollocks, and I’d had enough of their crap.

      There’s a guy one floor up from me, here, who also has lymphoedema, and has been treated by the same nurses for 7 years. As far as I can tell, his progress is zero. He’s at the lymphoedema clinic every week (the same clowns who put my infected leg in compression), and sees the nurses every few days. And is apparently very ill. I’m not surprised.

      My GP came round in September, I think (maybe October), just to tell me that unless I went into hospital immediately, I’d die of septicaemia. Obviously I didn’t die (and I don’t think he’s forgiven me!), but looking at that photo from November, I probably came pretty damn close.

      Last Thursday I saw the other staff nurse I’ve not seen for months, told her about the new treatment from the dermatologist, and immediately she went into the default “Oh you can’t use much of that, it’ll do horrible things to your skin”! Ignoring the fact that she’s at least partly responsible for the horrible state it’s in! It’s her that’s been telling me the redness is due to “staining” when, as we now know, it’s bloody eczema.

      And since the nurses have put in an appearance again, my leg’s feeling worse. Could be coincidence, of course – this thing isn’t going to go away – but I’m still not happy and part of me – a large part – just wants to say Sod off, just leave me to deal with it.

      Next dressing change is Monday, but I’m also doing one later today, to see if I’m right about it sticking harder if it’s left longer.

      Watch this space . . .

      Ron.

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