Leaking Lymphoedema and compression – have I found a solution?

I believe I might have figured out what’s causing me such grievous problems.

The nurses, district and hospital, use a very coarse, tubular, mesh (can’t recall what it’s called), usually next to the skin to hold antiseptic dressings in place.

The trouble is, it’s so coarse, and my skin is so fragile, that if I rub it to ease an itch,** or pain, even through 4 layers of compression, or simply just flex my feet, ankles or legs, it strips off the skin with the efficiency of a grater, hence the hand-sized lesions, which then leak and make everything far worse.

**Itching is soul destroying, far worse than pain, and this mesh, plus a cheap and nasty absorbent pad called Xupad, which seems to be designed to hold the corrosive lymphatic fluid tight against the skin are the major causes for me, at least, but does anyone listen? No, they bloody don’t, but by Christ they’re going to in future.

On Tuesday, I had an aux nurse I’d not seen before, and she let slip that many people have problems with the mesh, but when I tried to draw her out, she clammed up. But why? If there’s a problem with this product, the patients surely have a right to know.

I’m hoping that tomorrow, Thursday, I’ll get one of my regular nurses, and I’ll be able to pry loose some information, but whether I do or not, as far as I’m concerned this mesh is a major liability, and I want no further part of it. Any antiseptic dressings they need to use can be secured by a conventional cotton bandage, or even just by the absorbent pads, which often happens.

Have I found a solution, at least in part? I believe so, but watch this space…

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9 thoughts on “Leaking Lymphoedema and compression – have I found a solution?

  1. I hope this discovery leads to the more effective, less harmful type of mesh being used and/or your usual nurse actually listening to you and taking some real action to get those nightmare legs sorted out.

    I’m sure you will, but do tell the nurse that the aux’ told you about the problems others have with it. I would put money on cheapness of product and/or the contract for the supplier having no “get out” being the reason that that particular mesh is used. This happens a lot in the NHS. From basic dressings right up to supply of surgical equipment and drugs. It’s always the patient who suffers.

    Wishing you a large canteen full of spoons and some good sleep

    Lucy

    • Cheapness rules, Lucy. The buyers source the cheapest possible adhesive tape but it has a slight design fault – it’s not adhesive! So, whenever the nurses leave a roll of good tape behind, I pinch it for the times when I have to re-secure my dressings.

      I was a buyer, for the better part of a decade, and I know full well that there is no excuse for sourcing crap. If you put enough effort into it, you can always find a good product at the right price.

  2. Sanitary towels. Always are excellent. Yes, I’ve used them to absorb Lymph Leakage! You can also get pads used for kiddie’s beds to catch wee if they wet the bed for larger areas.

    • Used them for years. Trouble is that unlike the Etuvit pads I currently use which draw fluid away from the skin, sanpro holds the corrosive lymphatic fluid in close contact with the skin, so I actually spent years making my condition worse.

      It wasn’t until I was changed to the hideously expensive Flivasorb pads (£45 a day!), and later to the cheaper Etuvit, that I began to improve. I was the first person in this area to use Etuvit, and they kept me dry, at a time when I was leaking prodigiously, for 26 hours. Then the makers cut corners and, though my leakage is a small fraction of what it was, it leaks through in 6 or 8 hours.

      Will the nurses listen? No. Why? Because no-one else has noticed! Bullshit! I was using them for weeks before anyone else, I was the bloody guinea-pig, which means it’s possible no-one else used the original version but me. Can the nurses – by which I mean the staff nurses – get their collective heads around this possibility? Don’t be silly . . .

  3. At last a small light on the horizon, at least a real option – Give it em good, as I’m sure you will £ is NO excuse for them to torture you

    All best as always Ron xxx

    • Jayne, this isn’t aimed at you it’s just a general observation.

      The weird thing is – judging by the shock and horror my stance has generated – nobody opposes the nurses, just as I found, when I did, that no-one opposes consultant either.

      What the bloody hell is wrong with patients? I know a quiet life is to be desired when you’re ill, but FFS make a stand when the buggers fuck you up! Don’t just roll over. And don’t just leave it to occasional stroppy buggers like me, because there aren’t enough of us to make a real difference – we need EVERYONE to stand up for their rights, whether the idea frightens you or not!

      • I’ve been standing up to this sort of crap from the “professionals” for most of my adult life. Sometimes it works, sometimes it doesn’t. Sometimes it has resulted in things worsening. But whatever the outcome, it’s always worth having a go because without we “difficult” sods, nothing will stand a chance of changing for the better.

        Lucy

  4. Update:-

    Discussed my thoughts about the mesh with the Staff Nurse and – she agreed! Colour me stunned! Anyway, we decided that the tubular Yellow Line bandage will make a good substitute, being softer and close-textured so when – and if – I get back into compression, that will be used. I foresee a major row when I return to the hospital clinic as not only will they be resistant to the idea, I’m also going to refuse to permit the use of a paraffin-wax-based emollient which has already ruined one set of bed-sheets, and left greasy footprints everywhere, and I will not allow the compression to include my toes, as it did the first time – it was so painful I couldn’t walk, and had to cut my toes free.

    They will also be getting a bollocking for going ahead with compression in the clear presence of an infection. I had grave reservations but assumed they knew what they were doing – obviously I was wrong and in future my opinion rules.

    As I write I’m coming to the end of the most painful day I’ve ever had, so compression is probably some considerable way off. Normally the pain abates at some point, but not today. It’s excruciating just sitting, and if I stand and attempt to walk, it feels as if my legs have burst into flames. There is no letup whatsoever.

    I can’t stand many more days like this, so if I’m able I’m going to rearrange my flat so I can use my wheelchair indoors. And if that doesn’t work I’m screwed.

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