Lymphoedema – Winning the Battle?

Well – it certainly looks like it.

Judging by the appearance of my legs, my refusal to give in and have them swathed in compression dressings was eminently justified. Following (just about – nurses not keen so much snarling ensued!), the guidelines from APH the leakage and swelling have dramatically diminished. So much so that yesterday, for the first time in many months, I was able to wear trousers. And trust me, that is a big deal!

There are still some minor leaks, and one spot on each leg which seems to want to become an ulcer if given a chance; my right foot is still somewhat swollen, and I’m shedding dead skin the way a Christmas goose sheds feathers, but on the whole I’m pretty sure I’m on the mend.

I’ve no doubt that 10 days enforced bed rest in hospital was a major contributory factor in the improvement, but the deterioration forecast by the nurses now I’m home simply hasn’t happened – on the contrary, the improvement continues. Compression is still being pushed, despite the fact that it’s been tried twice and has failed me miserably, and no way is there going to be a third time.

And, of course, the evidence speaks for itself – compression is not necessary, at least in my case. I do get awfully pissed off with the idea that just because something has always been done – like compression – it means it always has to be. No it bloody doesn’t – try thinking outside the box occasionally – you might enjoy the experience! In medicine as in tailoring, one size fits all is rarely a success.

Yesterday, I was back in the kitchen, on my feet, for the first time in almost a month, making a pot of bean and vegetable soup, spiked with ground, and finished with leaf, coriander. I was hauled off to hospital on November 11, and I believe that the crisis was provoked a couple of days earlier when, despite extreme pain, I spent much of the day, on my feet, dosed with morphine and cooking for the freezer. Yes, I know I should have waited for a good day, but it was becoming increasingly clear there wasn’t going to be one, so I had to bite the bullet – and it bit back, wiping me out, utterly, and confining me to bed for 10 days.

While in hospital I was on the receiving end of 3.5 litres of i-v Vancomycin – it would have been more but cack-handed staff blew out all my useable veins, some of which are permanently destroyed, others are returning to normal). In addition they also managed to ramp up a more or less normal aversion to needles into a full-blown phobia, thanks to their fuckuppery (full horror story here).

Because, ultimately, I refused to allow anyone else near me with a needle or cannula – all that got me was more pain for zero result; even the experts from Phlebotomy couldn’t tap the tiniest amount of blood – they were forced to do what they’d previously said was impossible, and find an oral alternative to i-v Vancomycin (which itself, taken orally, has almost zero bio-availability).

Along with Doxycycline, they prescribed an oral antibiotic which was new to me, Rifampicin, which bloody near destroyed me.

The following items are those side-effects which affected me. The full list – too long to post, can be found here.

Those marked with an asterisk were present while still in hospital, those with a hash mark are still with me.

Some were reported to the consultant, like the hallucinations (seeing spiders that weren’t there in my case – this seems to be a recurring theme when I’m admitted – see below), and a persistent nose bleed. I mentioned these to the consultant, who seized upon the spiders, ignoring the nose bleed (which stopped only a few days ago), immediately assumed it was the DTs and started quizzing me about my drinking habits!

I’ve been to the pub just 3 times in well over a year, and I don’t drink at home so, no, I am not an alcoholic. Thing is, though, he’d prescribed a drug which is known to cause hallucinations – I was hallucinating – so why the automatic assumption that the cause was something I’d done and not the goddamned drug?

I see spiders because I’m an arachnophobe. If I were afraid of rats I’d probably see rats. Oddly, though, when I was admitted in March-April for 6 weeks,  several people were seeing imaginary spiders – what the hell were they feeding us all to cause that?

Anyway, Rifampicin:-

For the Consumer

Applies to Rifampicin: oral capsule, oral syrup, oral tablet

  • blood in the urine or stools*# (It also says, elsewhere, that it can turn urine and other bodily fluids red. Whether this is the same phenomenon or a different one is unclear.) NB: If any doctors or nurses are reading this, have the sense to tell the patient this will happen, because when it does, without warning, finding oneself in possession of a pee bottle full of what looks like blood is terrifying!
  • confusion*# (today, Dec 5, is the first clear day I’ve had since getting out of hospital)
  • coughing or vomiting blood
  • dark urine*#
  • darkening of the skin*#
  • general feeling of tiredness or weakness*#
  • headache*#
  • increased thirst*#
  • irritability
  • lethargy*#
  • loss of appetite # (Regained only in the past couple of days)
  • mental depression
  • nausea and vomiting*#
  • painful or difficult urination*#
  • persistent bleeding or oozing from puncture sites, mouth, or nose*#
  • skin itching, rash, or redness*#
  • tiredness*#
  • unusual tiredness or weakness*#
  • feeling, seeing, or hearing things that are not there*
  • Belching (normally I am completely incapable of belching, have been all my life; it can be triggered only by sticking a finger down my throat).
  • indigestion
  • not able to concentrate (This has let up only in the last few days.)
  • pain or discomfort in the chest, upper stomach, or throat
  • weight loss

Many of these, as indicated, continue even though I stopped taking this drug about 14 days  ago, and can do so for some considerable time, apparently.

Doxycycline caused no problems. Sadly, it’s not wonderfully effective either, and it was the dressing regime initiated by APH, and continued with extreme reluctance by the district nurses**, which has brought about the improvements I’m now seeing.

**The application of silver-impregnated AquacelAg dressings, left in place for a couple of days, dried up my leaks and, by some mechanism I don’t understand, also reduced the swelling. There is a downside – they stick to open wounds viciously, as they dry them out, but as long as they’re soaked off carefully with warm water, there is no reason why this should be traumatic. It’s this aspect, though, which the nurses have taken against. Completely ignoring the fact that, despite this, the dressings are quite amazingly effective and, ladies, THAT’S ALL THAT MATTERS!

Note: After about a week of i-v Vancomycin I was told that my MRSA was gone. Nobody to whom I’ve told this believes it. Even I’m not convinced! Based on everything I’ve read, MRSA is extremely hard to eliminate, even with the huge volume of i-v antibiotic I was getting. Last week fresh swabs were taken from my legs, along with a sputum sample, and fired off to the microbiology lab. No news of any results so far, which is very unusual.


8 thoughts on “Lymphoedema – Winning the Battle?

    • Yep – it’s the “for now” that bothers me, as I know I can crash, and my legs revert to a suppurating mess, in the space of a couple of days. This feels different, though. I had a busy day in the kitchen yesterday and, while understandably full of aches and pains as a result, I don’t feel on the verge of collapse, as I normally would. In fact, as I said, last time in the kitchen I fetched up in hospital!

  1. Terrific news, Ron, thrilled to hear you’re winning the battle, not only against the lyphoedema, but also the NHS!

  2. Ron, as someone who follows your blogs could you maybe when you feel up to it update us on
    your hospital clinic appointments,did you ever get to see the consultants re your lyphoedema, and vascular problems.

    • Hi Maureen,

      No, I never did see the vascular guy after the first time – and I doubt I shall now. The first appointment I missed as I was in hospital, the last, a few weeks ago, because I’d been in hospital again, only just got out and was still too ill to attend. And, incidentally, the ill-mannered sod never replied to my letter explaining why I wasn’t going to submit to the ultrasound scan. ( if you missed it.)

      However, if I had attended the last appointment, I have no doubt at all that I would not be doing as well as I currently am. Conventional treatment demands that my legs be compressed within multiple layers of dressings. I’ve agreed to this twice. The first time the nurses did it to my left leg, amid mind-boggling pain (like everything to do with lymphoedema, it’s terrifyingly painful). I put up with the pain and subsequent soul-eroding itching as long as I could, before removing the dressings myself in desperation.

      When I did see the vascular guy he asked how I felt about compression. I said – my exact words – that I was prepared to suck it and see, not suspecting that he was planning to do it right then and there – but he did, despite the fact that my right leg, at least, was clearly still infected (the stink was a giveaway), and you do not, ever, compress an infected limb, it’s just too dangerous.

      In addition there’s a belief that compression will stop any leaks. The mechanism by which this is supposed to happen is pretty much a fairy-tale, and flies in the face of the most basic of fluid dynamics, i.e. that liquid will always take the path of least resistance – in the case of my legs that would be the channels it had already carved in my flesh, and so it proved as, when they compressed my left leg, previously, the flow from my right leg increased measurably. So I called a halt as, after several weeks, it was getting worse, not better – in the space of 3 days between dressing changes, a lesion the size of an old shilling, on my right leg, had grown to the size of my hand, and was well on its way to becoming a full-blown ulcer – a process reversed only in the last couple of weeks. Though it’s not yet entirely healed, it’s getting there.

      Then, last time I was in APH, they had their own ideas, as I’ve explained here, and within a week my legs had almost stopped leaking and the swelling had diminished.

      Once back at home I had a battle with the district nurses, who wanted to get me back in compression. I refused and, via a lot of shouting (I don’t like raising my voice, and losing my temper makes me ill, but it had become clear that they responded to bullying, so if that’s what it took, that’s what it was going to get . . .), I insisted that they continue with the APH method, which they grudgingly did. The result of that, today, is that my legs are almost normal again. The left leg is bone dry – no leaks at all – the right leg down to the tiniest of dribbles. My right leg is still a little swollen, as is my left foot – and I do mean a little – the bloated, suppurating, agonisingly painful, monster I’ve lived with for 9 months is history! Though I have no doubt that it would still be with me had the nurses got their way instead!

      As I’ve said, both legs are still shedding vast amounts of dead skin, and I hope this will end at some point. For now, prior to each dressing change, I strip off the old dressings, remove as much dead skin as possible, and wash both legs in an anti-bacterial solution originally prescribed when I had MRSA, but it’s good for less specific use, too

      I’m still not having much fun, and am still taking morphine, but at least the pain is now under control for the first time.

      And you know what really pisses me off? Back in April, when I was in APH for 6 weeks, they fixed my legs – cleared the leaks right up. They might well screw up everything else they touch, but they seem to work magic on my legs.

      So, when I was first assigned to the district nurses, and repeatedly ever since, I asked them to get in touch with APH, find out what they’d done, and carry on with it. They refused. They hid behind jurisdictional bullshit, but all they had to do was get their boss to talk to my GP – they had my permission – and get a look at my hospital records on his computer.

      Had they had the initiative to do what I asked I have no doubt that I could possibly have been cured by now. Instead, until I was re-admitted to AHP a few weeks ago, I spent the better part of a year just getting worse, and on several occasions was pushed to the brink of suicide by the pain.

      And all because a bunch of people were too pig-headed to ask for help and advice from another department.

      Doesn’t that give you a nice, warm, glow?

      No – me neither!

  3. Ron Thank you so much for the update,glad that your legs are improving. My question may have seemed a little intrusive but I can assure you it was out of concern.

    • No problem – I’d been meaning to post it anyway.

      Update: I was subsequently admitted to hospital with Pulmonary Oedema in August 2014. While there they checked my MRSA status – it really is gone.

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