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.