MRSA – The Return . . .

Can Amazon sell me a hooded robe, a brass handbell and a staff with a plaque  bellowing “Unclean!” at the world?

I’ve been telling every bugger who’ll listen, for weeks now, that there is something seriously wrong with my legs, beyond Lymphoedema which, trust me, is bad enough. And back comes the stock, meaningless answer, “You have cellulitis.”

Meaningless because all that means is that I have an as yet unspecified infection.

This morning I got a phone call on my landline – so as I was having my dressings changed, and it was out of reach, I ignored it.

Then my mobe rang, which was in reach and lo! It was my GP – my extremely elusive and unhelpful GP. It seems he only calls when he has bad news to impart. Last time, when he came in person about 5 weeks ago, it was to tell me I was going to die horribly unless I agreed to be admitted to hospital immediately. I refused. I also failed to die which, based on his behaviour since then, pissed him off big-time!

Today he wanted to share the news that swabbing my legs last week had yielded the information that they are infected with MRSA. That’s the second time since August, so clearly, as I’m housebound, some bugger is bringing the infection to me. And the only people I see on a regular basis are the district nurses, who are here every day, so figuring out the source really isn’t much of a reach

The worry – and I really need to talk to an MRSA expert about this, and soon –  is that the infection is in an open wound and could conceivably kill me.

The GP is sending me some information on how to treat MRSA, but what the fuck can I do? I’m the goddammed patient, FFS – I need care, I don’t need to know how to care for someone else! I need someone to take care of me. It’d be nice if they kept me shiny side up and sucking air, too, as a bonus.

I do need to know how not to infect anyone else, though.

As regular readers will know, I live in a supported scheme – have done since my early 50s, the age restriction is waived for disabled tenants – and I’ve already told the scheme manager, who’s in my flat several times a week, to get herself checked out. I’ve no idea how easy it is to pick up MRSA – very, in my view! – but she often, of late, has taken out the bag of used dressings the nurses leave behind, so it’s probably a good idea. I’ve also got myself some laundry sterilant, which sterilises low-temperature washes in case I’m picking up MRSA that way, and also to prevent anyone picking up mine.

I’ve sent word to the nurses, via the trainee they sent to me today – I’ve also phoned them but either no-one is there or no-one’s answering.

The trainee worked out very well – if people are prepared to listen I have a lot of information to impart, and I’m a damn good teacher – and she paid attention, applied what I’d told her, and didn’t hurt me more than was unavoidable – which is pretty much all I ask. I’ll never complain about unavoidable pain, but god help the nurse who hurts me through carelessness, clumsiness, or stupidity. Lymphoedema is painful enough without it being made worse.

I can tell nurses how not to hurt me more than they need – if they choose not to listen then they are no use to me or anyone else. Nurses, and doctors, tend to forget patients have rights, among which is the right not to be hurt needlessly. Not enough patients are aware of their rights, which makes those of us who are very unpopular!

Weekend before last I blew up one auxiliary nurse for brutality – there’s just no other word for it. In the past 6 months she’s inflicted more pain on me than everyone else combined, and I finally lost it.

Then last week I was asked if I’d like to remove my own dressings and wash and debride my legs – something I offered to do months ago to save time. Since then I’ve found it completely impossible to reproduce the levels of violence the other nurse was using, even though I’ve removed vastly more necrotic tissue without pain or bleeding – I’ve failed to hurt myself even by accident, so I can only assume that what she was doing to me – and doubtless to others –  she was doing deliberately. That or she is so unbelievably dumb and careless she has no place in a nurses’ uniform. I simply can’t see how she can avoid injuring her more fragile patients.

***PS: My GP has sent me two bottles of Octenisan body wash, to be used to treat MRSA in preparation for surgery – what does he know that I don’t know. He was waffling on about surgery on the phone, but since I have no surgery scheduled, I tuned him out. Now I’m wondering what the hell is going on?

15 thoughts on “MRSA – The Return . . .

  1. Oh FFS – Someone has to be bringing in the MRSA and it all points to one or more of the nurses! The doctor shouldn’t have just spoken to you over the ‘phone, he should have come out to you, explained everything, listened to what you had to say and then prescribed anything that was needed – not just the body wash but Oramorph!!!!
    How the hell are you supposed to keep your home and yourself sterile? How can nurses, who have the germ on them, come and keep you sterile in your wounds, and how the hell are you supposed to look after yourself?
    God give me strength, I want to come and tackle everyone for you, and for me ‘cos they are making my blood pressure boil!
    Oh, and ask your doctor to refer you back to the lymphoedema clinic/consultant.
    And as for that bloody cow of an auxiliary nurse, she needs to be reported as not only has she been doing that to you Ron, but to others who are frail and elderly who have no-one to speak for then and are just suffering. Give the bitch 5 minutes with me, I’d have a great time getting all this anger and hurt that I feel off my chest 🙂 She does need reporting though as who knows what other things she is getting away with.
    Take care – Jay x

    • Well, Jay, I blew up the idiot nurse in front of the staff nurse, as well as reporting her and telling them to keep her far away from me. Don’t know what else I can do. I’ve also put her former colleagues (she’s moved on now), in the picture, as they thought she was wonderful.

      The big problem is, though, that most patients don’t know they have rights, and the most important is that nobody can do anything to you that you don’t want them to do, or in a manner in which you don’t want them to do it, which covers most eventualities. In hospital, I have standing instructions – renewed every time I go in – if you can’t find blood in two tries – go away!

      As for the MRSA, I hate to say this but I should probably be in isolation, in hospital. I can’t really look after myself at the best of times, and this isn’t helping. And with the bug already infecting open wounds, if I get a bath (but I can’t), body wash or not, it’s going to spread like wildfire.

      I’ll talk to the staff nurses again – they ganged up on my GP and got me the Oramporph yesterday – see if there’s anything they can do cos I’m at a loss.

      I was clearly quite right, though, to abandon the compression and refuse the ultrasound scan, because I’d have infected the entire ultrasound department and, with the compression, the MRSA wouldn’t have been found and could easily have killed me. It still might.

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  3. Ron Is it possible that your own skin problems attracted the MRSA that I think we all have. The body wash that you have been prescribed is for MRSA infections not just preparing one for surgery. The only problem with it ,it would seem is that each time you use it you have to change all clothes and bedding so as not to re infect yourself.

  4. MRSA skin treatment procedure is a nightmare to manage for spoonies. Did it in September, luckily enough in hospital because of infected legs like you. Got given the info for home treatment and just said forget it, no way I could manage. I struggle to get dressed once a day and can only bowl wash at home, cant even reach legs and feet. No nurses help would be available even though this is a medical treatment. They wanted head to toe cleaning with herbicide based wash every day for 5 days and nasal cream too, clothes changed twice a day and washed each wear. Towels used once only, then washed, bedding etc too. Had to get help in hospital to do it all.

    Also your GP should be doing blood tests to see if you are collonised or if the infection has spread into your system. If the latter, then usually iv vancomycin. I also had to have all my open dressing packs, bandages etc destroyed as those were a potential source of reinfection.

    I too ‘know’ I got it from district nurses as a fellow housebound spoonie. Take care of yourself and don’t push yourself over the edge by trying to cope with the crazy cleaning and washing schedule.

    • In the info I’ve been sent there’s no mention of changing clothes or bedding so obsessively. Clothes, I have enough to change every day, but only ONCE a day, and that assumes having the spoons to do my laundry once a week (the reason I have two weeks clothes is because I often can’t do my laundry every week). As for bedding and towels, absolutely no way that’s happening – I simply don’t have the storage space – it’s a flat, not an hotel!

      If they want to go down this route, I need to be in hospital, using their PJs, towels, and bedding. And preferably in isolation.

      As for the source of the infection, a guy on the next floor also has lymphoedema so it could be him** – the place is full of fire doors which are a massive health hazard as it’s impossible to avoid touching them. Ditto light switches. In the flu season I routinely use disposable vinyl gloves when moving around the building in my powerchair, or using the laundry machines.

      **Of course, equally, I might infect him. There’s a very good chance I’ve already infected the scheme manager (supported accommodation), as she often takes out the bags of used dressings for me. I’ve suggested that she insists that the nurses use the NHS dressing disposal system for everyone in the building producing potentially infectious waste. As I said, there’s two of us with lymphoedema for sure (possibly also with MRSA by now), and with an ageing population here there are bound to be a few leg ulcers and assorted lesions.

      I could have picked up my MRSA in hospital in April – I was in for 6 weeks, they tested me on admission, but not on discharge (thus maintaining their zero MRSA record without actually knowing if the claim is valid or not!). Dragged back in, unconscious, in August, tested positive on admission. That could have come from the DNs, or from the hospital in April. No way of knowing, but until hospitals start testing patients on discharge the true MRSA status will never be known.

  5. Hi Ron

    There seem to be lots of leaflets and info handed round that offers differing advice. The main one I received was this one below with lovely instructions on how to manage at home. Because of my infections I needed to change my towels every wash and hand wash rather than the once a day quoted in here. I’m not sure many people would have the required amount of spare bedding and towels to cope!

    Click to access DoH_MRSA_Advice.pdf

    • Thanks for that. As I said previously, though, I simply don’t have the space for sufficient bedding or towels, so it would only be doable in hospital.

      That leaflet has cleared up a mystery – a crop of pimples on my legs that refuse to go away are probably caused by the MRSA.

  6. How many swabs have you had in recent times? It might be a very recent infection. I was also wondering about the transport you had to hospital – I have heard that ambulances and hospital transport methods are high risk sites for MRSA. I am sure you are doing all the right things to deal with it yourself, but the nurses worry me, possibly bringing it back in over and over. You really need barrier nursing Ron x

    • 2 in six weeks, one of which was lost! And, of course, I’ve no way of knowing how many times MRSA has popped up on swab results and been missed. Not at all I’d hope, but I have no way of knowing. And as I’ve deteriorated so dramatically since my vascular clinic appointment, I could have picked it up there. In fact, the more I think about that the more likely it feels – after all there are likely to be infected patients given the nature of the clinic.

    • Almost forgot – I always get taxis to hospital, the ambulance service requires me to be ready two hours before my appointment to allow time for picking people up which, especially when that appointment is for 09.30 – simply isn’t feasible. Plus there’s hours of hanging around to come home too, both waiting for full load to assemble, and then the grand tour of Wirral, dropping people off. Taxis are expensive (£20+ for the vascular clinic), but vastly more convenient.

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