Be aware – gross ulcer photo below.
Just had a conversation with my GP. He’s been in touch with the vascular doc, who has said – this bloody obsession again – that compression is the only way forward. I told him, when he asked if I’d be willing to try compression and – these are my exact words – I said “I’ll suck it and see.” That’s all. No promises beyond that, just a willingness to try it and see what happened.
What did happen is that they wrapped up both legs, even though the right one was infected. The pain was huge and I had to cut off part of it as it was crushing my toes. After a couple of weeks, during a routine dressing change, there was a shilling-sized lesion on my left ankle where, previously, there had been nothing. Two days later the nurse returned to check the lesion – it was the size of my hand. And that point I called it off (and because of the pain).
It’s been tried on two other occasions, and it’s made me worse. There won’t be a fourth time.
Though, to be honest, the pain has been so bad of late I have been seriously considering it. However, I’m told, via the Tissue Viability Nurse, that my circulation would have to be checked first, and the only possible position to apply a blood pressure cuff is exactly where the ulcer is, and that would be far too painful to even contemplate.** Even the breeze from an electric fan is excruciating.
**Don’t get me wrong – the TVN would be quite happy to inflict horrendous pain on me. I won’t let her!
This is my ulcer, as of yesterday:-
If compression isn’t suitable, then full-time bed-rest with my leg elevated to 30 degrees at least is the other option. That’s not going to happen for various reasons.
1. If it were to be in hospital, I sincerely doubt my ability to survive in such an infection-ridden environment. In six weeks last year I picked up 5 hospital-acquired respiratory infections. Eventually I had to have my right lung aspirated to remove fluid caused by my heart failure** (and doubtless the infections didn’t help either). And for my leg we’d apparently be looking at months in hospital. No way in hell!
**That, of course, is the same heart failure I’m now told I don’t have.
And I doubt my ability to survive, long-term, the perpetual fuckuppery with my meds in APH. At home I stick rigidly to a time-table, which keeps me stable. In APH the drugs rounds are hopelessly erratic, not happening at all some days, and never anywhere near the timetable I need to keep me stable.
2. At home, who the hell would look after me? Even now, I’m supposed to sit with my leg elevated. I even designed and built a leg support to do so painlessly, but it’s just not feasible. For a start, I have to pee every 15-20 minutes for much of the day. And in hospital, too, come to that, and no, I will not have a catheter! I’ve seen a grown man reduced to tears of pain having a catheter inserted, and again having it removed. As for a bed-pan, again, absolutely not!
3. I know from past experience that I will deteriorate physically if confined to bed. It’s happened in the past, when I still had my strength. If I was confined to bed now, I might never come out.
4. I have osteoarthritis in both hips. Being immobilised for a long period is a seriously bad idea
And if that’s not suitable, and frankly I won’t even consider it, the consultant is, finally, prepared to discuss amputation.
And that terrifies me. Bravado is all very well, but there’s a very real risk I won’t survive the surgery and, despite what I’ve said about that possibility, when it comes to the crunch I find that I don’t actually want to die after all. And, of course, there’s a very real risk he won’t do it for that reason (doctors hate adverse publicity – one of my GPs said, last year, when refusing to give me a particular analgesic “What if you die? Think of my reputation!”), but my GP is setting up an appointment, so we can at least discuss it. It’s no longer the forbidden subject it was.
In the meantime, in case it does happen, I need to dig out my weights to strengthen my arms as using crutches with one leg takes more strength than I currently have. Using my manual chair instead of my powerchair will help too. Of course, I’ll probably have a prosthesis eventually, but I see my future mainly on wheels.
But there’s no getting away from the fact that, having got through my 70 years with nothing more serious than having a toenail removed, the prospect of surgery terrifies me far more than I expected when there was no chance of it.
I know it sounds perverse, after everything I’ve said, but that’s how it is.
Finally, there’s the option of maintaining the status quo if that’s the only viable alternative. The nurses have said that this wouldn’t be a problem – they have others in the same position – but that would need very much better pain control than I currently have.
In fact, pain is the biggest problem. The ulcer itself isn’t disabling – the pain is.
Talking of which the nurses were supposed to be here today, to bring me a supply of dressings – they haven’t been.
One last worry – what if they take my leg below the knee – and I get another ulcer? Or the lymphoedema returns (it could, it’s only in remission – it’s incurable).
Note: Currently my legs are modestly compressed. This was my idea. They are wrapped from foot to knee in a double layer of 10.75cm ComfiFast Yellow Line tubular bandage. Not only does this protect the fragile skin, it also provides sufficient compression to stop my legs from swelling. It’s also the cause of much of my ulcer pain, as is the dressing applied to it. And if this causes pain of such severity that I am willing to contemplate death or amputation, then it surely gives you some idea of how much worse 4-layer compression – elastic bandages and cotton-wool-like (but very much firmer), wadding – will be.