Warning: Ulcer photos immediately below the line – don’t click through if squeamish.
My GP refuses to give me the drugs I need to control the potentially fatal attacks of Pulmonary Oedema. At least I assume he refuses – it’s hard to tell as he can’t be arsed talking to me about it.
And now I can’t get the correct dressings for my leg ulcer and, without them things could get very nasty very quickly.
Then, a week ago, I started to run out of dressings. I haven’t posted any photos for a while as my ulcer is so gross it sickens even me. And there’s the problem that I need two shots to cover it all, and even then I can’t get the extremities in as it curves around my leg – it’s 20cm end to end, and 10cm top to bottom. it’s only its irregular shape that stops it being 200 square centimetres of raw, suppurating flesh. And this – apologies to those who find them distressing – is what I have to live with. Plus the pain. I cleaned it up a couple of days ago, so it’s not as horrible as it’s been. Still not fun though.
This is the front view of my right leg. As you can see, it gets much bigger as it disappears round the back.
And this is the side and back view. I’ll be able to say Hi to my ankle bone very soon, and shortly after that it will completely encircle my leg.
Anyway, as soon as I had only a week’s worth left, I asked for more dressings (in fact I started pointing out that I was getting low a couple of weeks ago). Today I was expecting fresh supplies of either 15cm x 15cm and 10cm by 10cm – one of each will just barely cover it – or something bigger.
What I got was sod all. Sod all that was useful, anyway.
A little backstory. In 2013 I had infection after infection, culminating in an MRSA infection that, I was told much later, almost killed me. I can believe it – admitted to hospital, I had around 7 litres** of intravenous Vancomycin pumped into me, followed by oral Doxycycline, and an oral antibiotic which was new to me, Rifampicin, which bloody near destroyed me.
**Earlier posts have lower figures. 7 litres is closer. 250ml 4 times a day for 10 days, for a few of which they ran out.
So, early in 2014 a meeting was arranged with the Community Nurse Management (to sort out some problems), and the Tissue Viability Nurse to address the problems with my legs. Long story short we agreed that I’d take over the preparatory work needed prior to redressing, and that a bactericidal dressing, as recommended by the hospital, Aquacel Ag, would be used, since when my legs have remained infection-free.
Back up to date, the nurses arrived this morning, with – nothing useful. No Aquacel Ag, just the basic unmedicated version. I lost it a bit – I know it’s not the nurses’ fault, it’s the witless bean-counters – and started to say that if I got an infection as a result of the penny-pinching, I’d have someone’s balls. And the nurse, who can be a bit pushy at the best of times, interrupted me.
I hate that, because I have terrible ME-related problems that make it difficult to hold a conversation at the best of times, and if I’m interrupted I’m likely to forget what I’m trying to say. So I said “Shut up and let me finish”.
Nurse: “Don’t tell me to shut up, it’s rude!”
Me: “In that case, don’t interrupt me.”
Nurse: Can’t honestly recall what she said at this point, but it didn’t help.
Me: “OK – would you like to leave now then?”
So I finished my point that I’d take action against those responsible if I developed an infection as a result of their dangerous cost cutting. I bloody well will, too.
And yes, I did subsequently apologise
At the moment I have 11 10cm square bactericidal Aquacel Ag dressings. If my ulcer gets no bigger – fat chance! – that’s 3 dressing changes (it takes 2½ dressings a time and, of course, the left-over half can’t be reused as it’s no longer sterile), and a couple left over.
That will take me to Monday. After that I’m screwed.
Right now 2½ 10x10cm dressings just barely provide edge to edge coverage. There is zero leeway so, by tomorrow or Sunday I’m going to have to get creative with the cutting and patching.
Officially I do the dressing changes alternate days and at weekends but at the moment having someone else do it is just too painful, so I do them all. Today’s nurse is the only one who seems unhappy with this and makes an ostentatious point about having to enter it in The Book. The rest take the “it’s your body, so it’s your choice” point of view. Me too. If I didn’t know what I was doing it would be different but, demonstrably, I do.
The problem, as I’ve said before, is that some pain is unavoidable, and it’s worse if someone else does it (and frankly, some nurses are so heavy-handed they’re in the wrong job – today’s was one of those). Even doing it myself I can’t guarantee it’ll be painless, but at I can only blame myself if it’s not (it was today though now, three hours later, it’s horrendous and I’m maxed out on Oramorph until 16.00 at the earliest).
Something else that we sorted out at the beginning of last year – I’d rarely get the same nurses twice in succession, and this seriously compromised my treatment. Not only were skill levels widely variable, and everyone had their favourite techniques, there was absolutely no continuity. OK, after each session they write up what they’ve done and seen in “The Book” – a loose-leaf binder. The trouble is almost nobody reads it so unless it’s entered into evidence at an inquest, possibly mine, I can’t see the point of it. And now we’re back to square one, and there’s no telling who’ll turn up on any given day. At the moment, as long as I can be kept supplied, I’d be happy just to be left to get on with it by my self with, perhaps, a nurse visit once a week to keep an eye on things.
The nurse also said that the problem was that everyone wanted Aquacel Ag. I can’t say I’m surprised by that as it’s very effective. Many of the dressings used – and all are expensive – are no better than you’d get by popping into Boots for a pack of sterile gauze.
I used to be a buyer (shipbuilding), and part of my job was buying medical supplies and equipment. If I’d have done as poor a job as NHS buyers apparently do (as I’ve said before I can get better deals as an individual on the retail market than they can with the backing of a national government organisation, supposedly buying at trade prices).
And on that note it’s time to go and rest. I’ve pretty much been a basket case all day, and this fuckuppery hasn’t helped at all. I had planned to make mock chicken soup (using chicken-flavoured roast Quorn), but that’s a job for tomorrow. Right now I’m done for.