Leaking Lymphoedema and compression – not a good mix…

I’m recording this here mainly in self-defence, because my legs have taken a turn for the worse and the nurses refuse to accept that this is as bad as I believe it is. For me it’s not a belief issue – I can plainly see that all is not well.

On the left ankle, the shiny area is raw flesh, where the skin has eroded under compression bandages with which, for now, at least, I have refused to continue. On Sunday, that area was the size of a 10p coin – that it is now so much larger, 11cm x 9cm, approx, indicates that something has gone badly wrong.

Skin erosion over just 2 days  Click images to view full size, Back button to return.

On the right leg, just below the knee, you can see another eroded red patch, 9cm x 7cm. That has been there for some time but was less severe and more diffuse. Now it has become much more severe since Sunday. More severe, but smaller; in nurse world that apparently equates to better. In the real world it’s a bloody sight worse.

When I saw how bad things had become, added to the severe burning pain and the interminable itching which has got steadily worse since the compression was first applied a week ago yesterday, I decided that, until these areas heal, I would discontinue compression.

The auxiliary nurse had been delegated to remove the old bandages and apply the base layers of bandages and padding before the staff nurse arrived to apply the compression layers.

I said, politely, that I was having no more compression until I’d healed, which wasn’t well received, and the aux nurse went off to consult with the staff nurse who was with one of my neighbours upstairs. She came back with instructions to carry on as she’d been instructed!

I asked – still polite but fading fast – what part of  “No compression” we were having problems with, as it wasn’t going to happen.

Off she went again to talk to the staff nurse, bemoaning the fact that she had to go upstairs. I suggested that since the staff nurse was coming to see me  anyway, there was nothing to be gained by trekking off upstairs again, but off she went.

Staff nurse arrived.

Now she was here on Sunday, and was unnecessarily hostile for some reason, so I’d already decided I wasn’t taking any crap from her. And she gets ready to apply the fucking compression!

I said No!

“Are you refusing treatment?”

“No, I’m refusing compression until these lesions heal. We can revert to the standard treatment and come back to compression later.”

“There’s nothing wrong with your legs – all the nurses say they’re getting better!

“They were – they certainly aren’t now – I’m going backwards, not improving!”

“But…”

“But nothing – look at my damn legs – those lesions were tiny just2 days ago.”

Turns to aux nurse “Was there anything on the dressings?”

“No, nothing.”

Explosion of disbelief and exasperation from your scribe!

Luckily, I still have the dressings – the photo is the part from my left foot/ankle. Apparently bloodstains equate to nothing in District Nurse Land! Where there’s a natural crease in front of the ankle, the skin has split and it’s penetrated into the flesh, hence the blood. Staff nurse sees this as not a problem!

Bloody dressing

And the dressings from my right leg were wet – this is also not “nothing”.

The shiny, wet, red erosions are caused by lymphatic fluid, which is corrosive , and the compression bandages hold it tight against the skin, which is seriously bad news as it can dissolve the skin and eat into the flesh, which hurts like a bastard – another reason for suspending compression. and also for not having the ultrasound scan.

After further exchanges of pleasantries, I pointed out that compression had only ever been experimental. The consultant asked me how I felt about it, I said I was willing to suck it and see. He said, “Good man, that’s what I like to hear!” patted me on the shoulder and wandered off. That was the last I saw of him, which was unfortunate as there was a lot I needed to say to him.

The important thing, though, is that the compression was just on a trial basis – that’s what suck it and see means – and that was quite clear to the consultant. That he apparently didn’t tell the nurses – does he repeat every conversation with patients verbatim? I seriously doubt it – was cause for griping. Sod that – the fact that I’m telling them should be good enough.

I also made it clear that I felt that burying lesions deep under compression bandages for days, which made it impossible to see if they were getting better or worse, or even if they were infected, was a long way from being a good idea. Not well received, but as my legs have been infected for most of the past 6 months, not a risk I’m willing to take. As my GP so charmlessly pointed out, an infection could kill me.

There’s something else that worries me too. On several occasions, the nurses, when describing my problems to a third party – as it might be, the tissue viability nurse – have clearly been describing ,well, not me!

It’s understandable, as they see dozens of patients in a week, and it’s quite impossible to remember everyone in detail. I, on the other hand, have to remember only what I feel and what I see – so who’s likely to have the clearest memory? Yep, me. And it’s the same for any patient who actually pays attention (though based on what I saw in hospital, that’s damn few!).

The problem is that the nurses’ recollections are treated as gospel, and mine generally ignored. Hell, I’m just the patient, what do I know! And that can get dangerous as well as infuriating.

So, in future, photographs, previously only taken occasionally, will become routine, then I will have visual evidence and who remembers what won’t matter as much.

The other thing is that it appears no-one ever disagrees with the nurses, and that they are so used to getting their own way that they simply don’t have what I’d consider a normal response when someone – like me – opposes them. I found this in hospital too, when I introduced a limit on how many holes they were allowed to poke in me without finding blood (two, and then only briefly, not spend five minutes – as has been done – futilely poking about in the same hole).

But I digress. When balked, the reaction was anger. That’s wrong on so many levels.

I understand the frustration, but surely if a patient, like me, who has so far gone along with everything they’ve thrown at me, no matter how painful or inconvenient, suddenly balks and refuses to budge, it’s their duty is to find out why (starting with the assumption that there’s probably a good reason isn’t a bad idea), and address the problem, not sulk like a spoiled brat and take it as a personal affront! My legs – my choice. Patients’ rights trump petulance every time.

One final comment about leaks and compression. I’ve asked on several occasions what would happen to the leaks, and the stock answer is  “Oh, they’ll be pushed back into the body!” To which I say “Surely they’ll simply take the line of least resistance, which isn’t to be forced back against gravity and against the outward flow, but to use the channels already created?”

Blank looks all round.

And it should always be born in mind that every patient is different, and what works for most patients almost certainly will not work for all. There will always be exceptions, and the system has to be flexible enough to accommodate them (us).

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12 thoughts on “Leaking Lymphoedema and compression – not a good mix…

  1. I think I’m going to cry.

    What do they mean by ‘better’ ? Just supposing your legs are less swollen (and I don’t know that they are) , that does not mean ‘better’ if swelling is replaced by open sores.

    I have no medical knowledge or background whatever, but I still am unable to see what positive effect compression has on lymphoedema as it does not alter the underlying cause which presumably continues, wherever the fluid is ‘pushed’ to.

    You have done your homework – it’s known that compression is not always successful. Why don’t they accept that?

    The open and sore areas look absolutely agonising and are surely a result of the constant skin contact with the fluid itself – you say it’s corrosive, you’re not kidding – looking at your legs, give it much longer and you’ll be down to your shinbone.

    • looking at your legs, give it much longer and you’ll be down to your shinbone.

      That’s an ongoing gripe! The compression is excessive in my view, giving me the legs of a 10-year-old girl!

      My legs have been swollen – my right calf was bigger than my right thigh for a long time, and that, too, was swollen!

      There’s no cure for lymphoedema. After compression bandages it’s compression stockings indefinitely. The only reason I agreed to compression was in the hope I’d get back into trousers before winter sets in – shorts are going to be no fun! Nor are bare (well, bandaged), feet.

      Right, now I have to go and re-do my dressings, as they’ve cocked them up!

  2. Oh Ron, what a mess your poor legs are in. How can anyone think that they’re getting better?! I love the idea of a photographic diary, so that you have proof of how your legs are progressing, or not.

    Don’t let the b******s get you down!

    • Oh, I can deal with stroppy nurses (valuable therapy!), but these bloody legs really are getting me down. I’ve just cancelled tomorrow’s scan permanently – and they didn’t seem even slightly surprised!

      I’ve been thinking, today, and the only way I’ll go back into compression is with better analgesia and something to tackle the itching. Pain is bad enough but itching – especially when you can’t scratch – is sanity-destroying. I did scratch though, and the infection spread to my hands – on top of it now, on my hands anyway, no idea about my legs, though the stink’s gone so I assume the infection is too, thanks to me self-medicating yet again.

      Complain to the nurses about it itching and all you get is the old wives’ tale – “Oh, that means it’s getting better!” It’s staggering the crap they believe. Use potassium permanganate wash for more than a week and it’ll strip the skin off your legs, is also very popular. Except it doesn’t – I’ve recently used it for 3 weeks with very good results.

  3. Well Done for standing up to them, clearly their ‘treatment’ actually is making your legs worse

    Send your photos in an email to your GP and all consultants involved and insist they comment – also put in a formal complaint about the nurses; I’ve just had to do this with mine at sleep clinic.

    I think the only option left is to force them to see whats in front of them .

    xxx

  4. I’ve had Lymph Leaks & various sorts of compression so I feel like I can at least make an educated comment on what’s been happening to you Ron. Alarm bells rang when you blogged that your compression bandaging was going to be left on for WEEKS as opposed to days. That isn’t correct. I could manage 4 days with mine before it was too bunched up from slipping. It also doesn’t look to be like the bandaging is being done correctly. I can quite plainly see that your toes haven’t been done & there is a clear demarkation line where the bandaging ended & has swelling beyond. One of the most basic rules of Multi Layered Bandaging is that you NEVER have it done when there is infection present. Never. Not even the faintest whiff of infection. Skin integrity is THE most basic start to Lymphoedema treatment. Skincare & light Manual Lymphatic Drainage are Step 1. It concerns me DEEPLY that this is being done by a District Nurse whereas all my treatments have been done by a specially trained Lymphoedema specific Nurse, usually at a Hospice Clinic. I know how bloody painful compression bandaging can be with relatively healthy skin so I can’t imagine how painful this has been for you. Bandaging should never be done in isolation either. You need to be having MLD too.

    Imagine the Lymphatic system as traffic. You have a traffic jam. That jam simply cannot be cleared at that site alone. You have to get the traffic moving elsewhere so that your Lymph Jam can be shifted.

    There’s lots of different compression techniques which are, to be honest, pretty essential with Lymphoedema. Compression will work with leaks as long as the leaks are very small indeed. I have a Lymphangioma with gossamer-thin skin which likes nothing better than a random leak into my socks & shoes/bed/floor & I know I can stop that in its tracks with a Compeed Blister Plaster & my compression socks. I had to find that out after years of trial & error though! I think you’re right to take a break from compression. Your skin needs to be up to it. You’re absolutely right to keep a photographic record. I think that’s very important. Have you considered going to the press with this?

    Sorry this turned into a bit of an essay.

    • Shit! Wrote a reply as long as yours – and lost it!

      Sorry, too tired to do it all again right now even if I could remember it – I’ll come back to it later or maybe tomorrow.

    • Clearly an expert…funny how the one with most expertise is often the patient! Never ceases to amaze me just how supportive and constructive shared experience is.

  5. Is there any mileage in contacting PALS (yes, I know they are no longer independent) but it might be worth a shot, especially if you indicate that you are at the point of making a formal complaint to the head of the trust. You aren’t being listened to and your condition is worsening because of it, this surely would be grounds for PALS getting involved? Whoever manages the visiting nurses needs copies of these pictures too and an account of the information that the nurses clearly aren’t passing upwards. A formal complaint to the GP practice manager might not go amiss. Of course the complaint route always risks treatment getting worse, but it looks like you are at a point of no return with these legs and the constant mismanagement.

    That’s a lot of spoons required I know. Do you have any friends or family who could provide you with some (moral) support with getting some effective treatment?

    Lucy

    • Thanks Lucy – I’ll bear all that in mind. Right now though all I want to do is sleep, and I barely have the spoons to do that!

      I’ll get back to you.

      Ron.

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