Chronicles of the Heart, Part 55 – Life with Lymphoedema & Cellulitis…

If, like me (bilaterally in my case), you have the lymphoedema & cellulitis combo, then you know just how badly it can screw up your life – as in you’ll barely have one any longer. I certainly don’t.

Because of the swelling, none of my footwear fits me, nor do my socks, and my trousers simply won’t fit over the bulky absorbent dressings (for those of you unfamiliar with these conditions, my legs and feet leak – as much as 3 litres a day at their worst. Even if I could get shoes or boots on, they’d be soaked and wrecked within an hour or two, and my trousers, likewise, would be wet to the knees.

And just to add to the joy, the infection stinks. It can also be extremely painful and – far worse – itches intolerably, depriving me of sleep for days until I crash from sheer exhaustion. After which the cycle starts again. This is by far the worst aspect of it. Pain I can deal with, but the itch worms its way deep into my soul. Can’t scratch it either as the skin is far too wet and fragile

So, although I’m now otherwise well enough, though tired, to consider having some sort of social life, it’s still quite impossible.

My GP has tried the normally accepted antibiotic, Flucloxacillin, though this had to be stopped as it adversely affected my breathing, but it was having no visible effect anyway, nor did its replacement, Ciproxin. I also took the anti-fungal drug Terbenafine, to no visible effect.

However, about a week ago, via the Lymphoedema Support Network website, I came across a report from the Lymphology Society, “Revised Cellulitis Guidelines March 2013 ­– Consensus Document on the Management of Cellulitis in Lymphoedema.” This recommends oral Amoxicillin, 500mg every 8 hours. And that’s something I always have plenty of, as I buy my own to treat my COPD flare-ups.

So, at the moment I’m taking a loading dose of 1g every 8 hours for a couple of days, before settling into the 500g/8hourly routine. In theory, at least, I should see some improvement in 48 hours – we’ll see…

The trouble is, though, from reading the same report, it’s clear that this is likely to be with me the rest of my life, the lymphoedema because of my heart failure, despite APH’s best attempts to rubbish their previous diagnosis (look, if it looks like a duck, walks like a duck, and quacks like a duck, it’s a fucking duck, OK?!), and cellulitis is a notorious repeat performer.

So it seems that this is going to be with me for a long time, one way or another, and as I have no desire to sit looking at 4 walls and a computer for the rest of my life, I need to adapt to my new circumstances.

The first priority is already in hand – a new manual wheelchair (because although exercise is allegedly  beneficial for lymphoedema, in my case it also ramps up the rate of leakage, so that I leave a trail behind me like some human snail), not to mention the ruinous effect on my footwear and clothes. I do have a manual chair, a Quickie Ti, but the frame inset is such that my hugely swollen legs no longer fit the available space.

Then I need footwear that can survive being soaked in bodily fluids. Crocs spring to mind as, being moulded from plastic (or rubber, not sure which), they’re pretty much impervious and can easily be washed. The only question is – do they come in a wide enough fitting? I know I can buy shoes for people with swollen feet (at a pretty hefty price), but they’d be ruined by leakage as easily as conventional shoes.

That leaves trousers, and you have my full permission to turn me in to the style police if I ever wear joggers, a.k.a. trackie bottoms! That leaves baggy, old-fart-style trousers (please, kill me now!**), but they’d still get wet. Shorts or zip-offs are OK, the latter currently being worn but I need more than the one pair I have and they’re not feasible in winter. It’s possible that the mysteriously popular calf-length shorts (are they long shorts, or short trousers?), might serve, but I’ve not seen anyone wearing them who doesn’t look a complete pillock!

**OK, chronologically I’m actually an old fart – and I aged horribly in hospital (next to haggard in the dictionary, it said “See Ron…), though I’m recovering somewhat – but only chronologically, not in any other respect, like having no pride and buying baggy trousers from Chums!

That leaves socks. SealSkinz is a company that makes waterproof socks – among much else – for cyclists, and I figure that if they keep water out, they’ll also keep it in, protecting my shoes and trouser-bottoms from leakage from my legs and feet. As with Crocs, it depends on a suitable size being available.

And I must ask the district nurses if they know of anyone who produces a waterproof bandage, if all else fails.

Finally, if you are in the same situation, and losing fluid in fairly dramatic quantities, it is vitally important to look to your hydration, the more so if you are also, like me, taking diuretics. A sachet or two of Dioralyte a day might be a good idea too.

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9 thoughts on “Chronicles of the Heart, Part 55 – Life with Lymphoedema & Cellulitis…

  1. WHAT ABOUT A SKIRT ? NOT BEING FUNNY , MADE FROM WATERPROOF MATERIAL OR TROUSERS LIKE INDIANS, PANTALOONS LIGHT AND EASY WASHABLE

  2. Comment submitted by Danni:-

    Is is bad that I immediately thought of a skirt as well? I can understand you wanting to leave that as a last resort though . If you’re going to be in a wheelchair anyway, maybe wrapping your legs in towels/absorbent material will help? You could cover it with a lightweight blanket, and so long as you avoid tartan it won’t look too bad (please please avoid tartan- no-one should have a tartan blanket in a wheelchair!). The crazier part of me is thinking of the bed pads used for incontinence wrapped around your bandages.

    Plain black tracky bottoms aren’t too bad if you’re desperate and don’t want to go for a skirt, though I can see why you’d want to avoid them as well. From what I remember Crocs were wide fitting anyway, and getting a bigger size might work. They go up to a 12 I think. Military style trousers can be quite wide fitting, and when not in camouflage aren’t too obvious.

    Good luck! *Squishes*

    • The problem is, Danni, that anything which comes much below the knee, including footwear, is going to get waterlogged very quickly.

      Yesterday morning I had my dressings changed. Within 2 hours they were getting wet (despite being swathed in plastic-backed absorbent pads) and by midnight the fluid was simply pouring out of my legs, to the extent that the dressings were overwhelmed, and I had to get the district nurse night shift out to change them. Not helpful that they took 2.5 hours to arrive, and then rang the wrong doorbell, though.

      I’ve come to the conclusion that shorts are the best option. Might look a bit eccentric, especially in winter, but I don’t care! The insurmountable problem, unless Crocs work, is footwear. And not the least of it is that my size 9 feet are swollen to about size 12-13.

      Of course, if the flow from my legs can’t be halted, or reduced to a sane level, I won’t be going anywhere. Right now, if I make toast, for example, by the time it’s ready I’m standing in a puddle.

  3. If Charlie can wear a kilt, so can you. You need to become a neo punk or similar. Black death metal T shirt and (non-itchy) kilt combo. Think of the hours of entertainment provided by sporren jokes. OK, I sense you’re against pleats, in which case those skater boy, long, loose shorts things must surely be available (tho possibly I’m having a 90’s flashback). Anyway, seriously, Ron, the leaking, the itching & the hurting: what a trifecta of utter crap to be lumbered with. Who’s in charge of leg allocation? You need to have a word. Best wishes for a decent night’s sleep tonight.

    • New treatment today – a bandage slathered with zinc paste and something containing coal-tar ** from the smell. Painful at first, but soothing now, and I was just going to say no itching – but as soon as I started to type this it kicked in. Psychosomatic? Who the hell knows!

      **Not coal-tar but Ammonium bituminosulfonate which smells similar.

      On my third course of antibiotics for my legs – so far nothing is working.

      As for clothing, I’ve decided to go with shorts if the leaking can’t be fixed. Footwear is the so far insurmountable problem (except maybe for plastic Crocs), as they’d be ruined the first time out. A couple of weeks ago, going out for the evening, I tried putting my feet in knee-high plastic bags, but the amount of fluid they collected even before I went out was terrifying. I worked out, by weighing myself before and after a dressing change, that I’m losing around 3 litres a day. As I’m peeing around 4 litres – diuretics – it’s no wonder I’m dehydrated.

      Still, aside from my legs, I’m feeling better – self-medication helps. Vitamin B6 for depression(some of my meds cause a deficiency, which screws up the serotonin re-uptake mechanism – result, depression). Then there’s Potassium, which stabilises my heart (hospital doc suggested eating bananas, but that way there’s no controlling the dose), and vitamin C to stave off scurvy, which I developed in hospital and which comes sneaking back if I miss C for a few days. Which reminds me . . .

  4. I really empathise about your situation. I have chronic oedema swelling to the point of fluid overload, when I have to be admitted to my local hospital. No reason why can be found. Luckily I can be sucked dry with iv treatment but it all comes back on when reverting to tablets and I only get 2-3 weeks between admissions. When my legs are large I get leaking ( not on your scale Ron) but also cellulitis. I find Gabapentin I take for neurological reasons is the only thing that helps. Perhaps you could ask for alternatives like this to be investigated.

    Thank you for blogging and giving me something to laugh, cry or get angry over whilst I’m in hospital.

    • I suggested Gabapentin while I was in hospital – told it wasn’t suitable. District nurses suggested Oramorph, GP said I should take 75mg Amitriptyline instead (normal dose 20mg at night). That, along with my Tramadol, would fry my brain! Tramadol must never be mixed with any sort of anti-depressant. At best you can expect seizures, at worst a serotonin storm.

      On a brighter note, having given up on my GP for antibiotics for the cellulitis and megadosed on my own Amoxicillin for few days, before going to 500mg every 8 hours, it seems to be working. The infected area is much less swollen, and the dismal smell is much better too. So I have hopes for that – time will tell.

      And next time I go into hospital, I’m taking my laptop – way too much hassle typing blog posts on my phone – I can connect it to the hospital’s wi-fi network via my phone. And even if that doesn’t work I can write posts to be published when I get out.

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