The amputation of my ulcerous leg will happen…

Updated November 14 for clarity and typos.

 

This morning I met with the vascular surgeon.

To be honest, it didn’t start well, and a couple of nurses descended upon me and asked would I be OK to move from my powerchair to the couch. I’d only just begun to realises that, for a wonder, I had no pain at all (after an agonising and horribly early start to my day), so I said if they could do their thing while I stayed in my chair, I’d be happier as I had no desire to awaken my leg, but, if I really had to, I could move. We agreed I could stay where I was.

I’ve no idea what they thought I was there for, but they said they had to check my circulation using a blood pressure cuff at various points on my leg (and doubtless an ultrasound scanner too). I explained – politely – that I’d spent months fending off the community nurses who wanted to do that, and it wasn’t going to happen today either. My body – my rules. No painful procedures. So off they went, none too happy.

The thing is, the test was devised for patients with varicose veins, and it’s painful for them. For those of us with lymphoedema and/or ulcers, it’s pure, unmitigated, agony, can result in a lot of damage to the tissues, and I want nothing to do with it (when they wanted to check my legs last year I didn’t have a square inch of intact skin from knee to ankle – the pain and the damage would have been huge). So bear that in mind, folks – the bottom line, it really is a case of your body, your rules, but be sure you have sufficient knowledge, and know what you’re doing.

I mean, seriously, all I was there for was to talk to the surgeon to see if he really was willing, and if so, how dangerous was it for me, and was I likely to die on the table. And, equally importantly, what other options were available.

He was much more communicative than when I saw him last year, and we had a long talk. And for the record, he didn’t want to check my circulation at all and made it quite clear that until my pain was controlled, it wouldn’t be appropriate – so if I’d given in I’d have gone through the pain of the tests for nothing!

He is willing to take my leg off below the knee (which is what I want), as it’s easier to fit a prosthesis. It is, though, a more complex and thus riskier operation than doing it above the knee, which is much better for at-risk patients like me as it’s much faster and simpler (just the one bone and – as I know from my own research – fewer nerves and blood vessels). The sciatic nerve opens up into an entire network below the knee, as does the femoral artery and its associated veins, to give just two examples. Above the knee is safer, but more difficult for a prosthesis. Anyway, we don’t need to make a decision on that just yet. And as far as a prosthesis is concerned, I just need the ability to stand occasionally, not run a marathon. The rest of the time I’ll be happy with wheels.

My next question, given my stage 3 COPD and heart failure, was what were the risks to me? I explained that everyone I’d spoken to at APH had come down in favour of heart failure, and just one consultant (I told him who), at another hospital, was playing silly buggers and claiming my heart is fine. Well, he said, there’s certainly something wrong with your heart! Which surprised the hell out of me, and that bloody cardiologist is getting increasingly isolated.

Anyway, the risk of dying on the operating table is, apparently, quite low. The big risk is from being confined to bed and developing pneumonia (plus any other bugs that are infesting the godawful bays!). That was likely to kill me if anything was going to.

So I had a think about that later, and if I take my manual wheelchair into hospital, which I shall be doing anyway, I needn’t be confined to bed, I can trundle round the corridors and keep myself fit. It won’t eliminate the risk, but it might reduce it. It might also be possible to use the risk to be allocated a side room, away from the bays. We’ll see. In the meantime I need to use my manual chair as much as possible, to build my upper body strength. I lost a lot of muscle mass last year, and got almost none of it back. That needs to change.

And that’s about it.

He’s going to write to my GP to tell him I need more morphine (about 10 or 20% more), and I’m back at the clinic in 8 weeks, at which point, if my pain is stabilised, I might be seeing the anaesthetist to discuss his end of the surgery so if I’m lucky – and as long as it all goes well – I might be mobile again by Spring.

The nurses, by the way, have always behaved as if I’m insane, being willing to sacrifice a leg to end the pain (only someone who has never experienced serious pain could think like that), but talking to the surgeon it’s actually quite common. He also said what I’ve been saying – they get locked into a routine, and because compression is what they’ve always done, compression is what they always do until awkward sods like me poke them with a stick. That was just after I’d raised Einstein’s definition of insanity as it applies to compression and its utter failure in my case – insanity is repeating the same actions over and over again, and expecting a different result.

Oh, and one bombshell he dropped in my lap – ulcers can be cancerous and, given the degree of pain I have, he wants a good look at mine. And a biopsy too, I should think.

Advertisements

12 thoughts on “The amputation of my ulcerous leg will happen…

  1. well some good and some bad in there Ron, but i think you expected that.you must feel that at least some progress is being made now though. a lot to think about and sort out in your own mind eh? would you be able to return to the place you live in now for instance? is there anything your likely to need to make things even easier for yourself once home again? from what you’ve said over time, sounds like you have your place sorted for as you are now, would it be THAT much different with half a leg missing?(i mean maneuvering around your place.). of course it will take some getting used to not having that bit of leg if they do take it off, just remember, keep telling yourself its not there. accidents can happen if you forget. (as i told you happened to my bro in law…. one advantage you have over him is your not diabetic so your healing times will be better there. depends on if there are other factors involved (like how long you’ve been on your inhalers and whether like me ,you have thin skin cos of the steroid content of the latter and getting older.). anyway, whichever way you choose to go i wish you good luck.

    • No diabetes but Addison’s impairs healing, so we need to look at that closely. It’s occurred to me, too, that one reason for favouring an above-the-knee amputation is that the skin below the knee is tissue-thin. I also suffered what should have been a minor injury, just a bump on the shin, that still, 8 months on, hasn’t entirely healed. There’s another major reason but we’d be getting into the realms of the gruesome, which some readers don’t appreciate!

      To be honest, when it actually became a reality this morning it also became much more scary and I found myself backing away from it. Had time to think since then and, whatever time I have left, my quality of life would be greatly improved without this leg so if it really is doable, I’ll go with it.

  2. Glad to read that you seem to have had a productive appointment, Ron, with a consultant who appears engaged and on the ball. This may or may not be interest but I wonder if you’re familiar with the blog at http://arneamputated.com ? It’s written by a gentleman who has recently had a leg amputated following an accident and charts his recovery and

    • Thanks for the link. Yep, I know of it, I saw its original incarnation on Blog.com. His experience of hospital seems to be as chaotic but less potentially lethal than mine over the past 2 years.

      They keep trying to kill me, and I’m taking it just a tad personally. Just two examples sum it all up, from August (my last admission – almost died from Pulmonary Oedema). I take a beta-blocker, 2.5mg every 12 hours. One evening I was give 20mg – 4 days worth – as one dose.

      I assiduously check everything I’m given to ensure it’s what it’s supposed to be and at the right dose. It doesn’t make me popular (most patients just chug what they get without a second thought), but if I didn’t a cock-up on that scale would probably have killed me.

      A day later the ward Sister was on the drugs round. She gave me a measure of Oramorph. I watched her pour it, so just knocked it back. And thought – too late – that felt like a lot! So I looked at the measure. The 10ml I should have had was actually 20ml.

      OK, it was harmless – but it could so easily not have been. My GP is convinced taking a higher dose of Oramorph can kill me. It won’t – I’ve proven that to my own satisfaction – but he could have been right . . .

      The Sister was mortified, but did say that if I needed proof for my GP that 20ml was safe, I could use it. It also revealed, talking to her, that she hadn’t been informed, as she should have been, about the error with my beta-blocker, and she hustled off to make sure an incident report had gone in. Never did find out if it had.

    • Well, the surgeon is good to go, it’s all down to the anaesthetist now. The idea of a spinal block was floated yesterday but I really don’t want to be aware of some bugger sawing my leg off! The idea scares the hell out of me as it is, I don’t need to be a witness to it.

      I’ve had three procedures, in the past, for which I was supposed to have been sedated – not one of them went as it should and I wasn’t even slightly sedated for any of them.

      Still, I might be getting ahead of myself here – the best I can do is wait and see what’s on offer. At least there’s now some hope where, previously, there was none.

      • I’m really pleased for you-progress at last! They do give you a light sedation if they use a block, I can remember almost nothing of my operation except being told it was over-I’d been worried about the sound of sawing too! In my hospital they offer people a nerve block even if they opt for a general anaesthetic, as it kills the worst of the pain post surgery.

        Sincerely hope it goes ahead. It’s got to be a benefit to you.

        • Thanks Susan – the more information I can gather the better. You’re the second person to make that point about post-operative pain.

          Oddly, my nurses are extremely negative about this, despite knowing how bad things have been these past 2 years. All they can do is throw up objections – it’s as if they think I haven’t spent 2 years researching this!

          I was told, last year, that lymphoedema was the worst pain I’d ever experience – turned out that wasn’t even close to being true.

          As far as I can see, there’s no downside to surgery. At best I’ll be mostly pain-free, at worst worst I’ll have a phantom limb with all the problems I have now – and I’ll have an answer for that if it happens as I’d have an answer for it now if surgery hadn’t been offered.

Comments are closed.