Surgical appointment…

Trigger warning – suicide mentioned.

 

Next Tuesday morning an event that has taken two years of incessant pleading and nagging will finally happen – I get to meet a vascular surgeon who has expressed a willingness, no doubt hedged about by caveats, to possibly amputate my right leg below the knee.

Actually, that crisis was brought about by an unwillingness on the part of my GP to prescribe effective analgesia. In the end I had to go over his head to the senior partner in the practice. By then it had taken a year.

My GP was – probably still is – convinced that a effective dose of morphine would shut down my breathing reflex. True, it might, but might is a universe away from will, yet he treated me as if possibility equalled certainty, and it does not.

I take 10ml of Oramorph to top up my morphine (base level 90mg of Zomorph every 12 hours), and deal with break-through pain (a hell of a misnomer, as it’s pretty well permanent). GP prescribed 5ml every 6 hours, which did nothing so I ignored him and took 10. Sometimes I took 20ml and, on rare occasions, 40ml (1ml of solution, by the way, contains 2mg of morphine). And sometimes I’d take it every 4 hours (still within the normal rules). And I conspicuously failed to die as predicted.

But, no matter what I do, I’m in truly terrifying pain 24/7/52 – it NEVER lets up for more than a few minutes at a time.

I’ve just spent an hour looking for a particular comment in last year’s blog posts. Didn’t find it but one thing is crystal clear – I’m really no further on than I was a year ago when it comes to pain control. It’s no real wonder, then, that every time I get new bottle of Oramorph the temptation to just chug the whole thing is almost overwhelming (don’t worry – I’m not going to). Not yet, when I’m so close to a remedy.

The big problem is, for the reasons outlined above, I’m not getting enough morphine. I recently got Amitriptyline reinstated, which ensures that I get some sleep at least. That helps, but I really need more morphine during the day.

I recently experimented with adding an extra 10mg to my 06.00 dose, taking it up to 100mg, as I have a lot of 10mg capsules from when my GP was buggering about cutting back my dose. It was effective, but I had to stop it as I have no guarantee he’d agree to formally increase it once I ran out, so I’m having to keep what I have for emergencies.

Anyway, next Tuesday. The target is amputation – which terrifies me. Surgery, no matter how minor, always has, and I’ve been lucky enough never to need anything major until now. The chances of it happening, though, are slim. Stage 3 COPD, and heart failure both militate against my survival, and surgeons don’t like patients who die on them – it makes them look bad (doesn’t matter about me, I’ll be dead, but he’d be terribly embarrassed!**).

**My GP, last year, stopped my Tramadol because it might kill me, and how bad would that be for his reputation? Didn’t give a shit about me!

So I’ll probably need to look at better meds. It’s not, sadly, just a matter of tackling the lymphoedema pain with, say, a spinal block, as I have a hell of a lot of pain besides that (OA in both hips, and most other joints for a start, especially the scores of small joints in my feet), though the ulcer is by far the worst of the bunch – the pain is so bad right now, that if I got a phone call saying come in this afternoon, I’ll take your leg, terrified or not, I wouldn’t hesitate for a second!

On Wednesday, the Staff Nurse suggested I stop washing my ulcer as it was keeping it too wet (it’s also keeping it free of infection too, let’s not forget!). So today, I did as she suggested and, instead of disinfecting it with Octenisan, and washing it in a bucket of warm water, I just flushed it with Prontosan wound wash and blotted it dry.

And I am in fucking agony!

Normally, immediately after a dressing change, the pain is dialled down for a few hours. Not today – on a scale of 1 to 10 it’s around 15. Clearly, then, no matter what else it might do, dunking the buggerdly thing in warm water eases the pain considerably, if only for a little while (hey, I’ll take what I can get!).

So, screw it, I’m going back to the normal routine.

But I digress – again!

Over the weekend I’m going to print out a bunch of photos for the surgeon, including the one of my leg at the time when he wanted me to have an extremely painful ultrasound scan (normally carried out to check for varicose veins on patients whose skin is normal – mine was mush and everyone who commented (that’s what I was looking for), said avoid it like the plague. So I did. Even the appointment letter warned that it was painful, and when a hospital admits that in advance you’d better take it seriously.

I wrote to him – same guy but wearing his physician’s hat – explaining in detail why I couldn’t submit to the scan. He couldn’t be bothered replying.** So I’m taking a copy of that with me too, as well as a detailed case history explaining why I’m using a powerchair (in the hope that he won’t get it as badly wrong as the idiot cardiologist did – see herefor which there was no possible excuse).

**I was subsequently dumped from the clinic for failing to attend an appointment of which I hadn’t been notified.

I did actually wind up in hospital around the time I should have had the scan, for about 10 days, but no-one suggested I have the scan while I was there, not least because my leg was a mess.

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5 thoughts on “Surgical appointment…

    • Something has to change, that’s for sure. I’m so weak at the moment I don’t know how I’d cope with one leg – but that’s a problem for later! One thing I’m going to need is fixed hand rails in the bathroom, not the portable ones I’ve got now.

      On the plus side I noticed my GP has reinstated the full dose of my beta-blocker, not the reduced dose the cardiologist recommended, so that’s a step in the right direction.

      And between now and Tuesday I’m going to do nothing but rest. I can’t afford to miss this appointment.

      • well all i can say, is lots of people do cope after an amputation.(I know, not much consolation is it?) and at least you already know that your wheelchair,etc can be accommodated in your place. unlike my bro in law who is still ,along with my sis, trying to get somewhere where they both can live. after 19yrs of being together, and 18months now apart, hes still in temp accommodation (1 bed flatlet) and shes still in the 2 bed house they’ve lived in all these years.no account is being taken of the fact that my sis has been on DLA and before that incapacity benefit , from her late 30s/early 40s plus a stroke 7 yrs ago which she is showing more symptoms of now..or rather results from.but nope the accommodation is just for HIS needs not hers.they tell her. grossly unfair. but that’s how it goes.(oh and lie after lie too.the condems aren’t the only ones into that game…yet we are supposed to be a Labour council here. not a lot of the labour politics being shown i am afraid.)
        anyway, you take it easy and ill be thinking of you come Tuesday.

        • Problem is, Labour or not, the council has still had its funding cut by central government. All council’s have been hit hard financially.

          There are grants available see http://www.disability-grants.org/ Can the house be adapted (2 wheelchairs, one upstairs, one down, and a stairlift, for example?).

          Also – if they haven’t done it already – get referred to an OT and to the Community Nurses if possible. I’d had bugger all my entire life until the nurses got me my clockwork bed. There is equipment available – it’s just a matter of accessing it.

        • Are you sure you want your last comment publishing? Just thought I’d check . . .

          As for me. I have only one functioning leg/foot anyway, so if it wasn’t actually there it’d make little difference. All my right leg is good for is stopping me falling over if I have to stand! And it doesn’t always do that!

          After last night, though, I really can’t see surgery happening. Pulmonary Oedema set in around 02.30 this morning, and hasn’t let up yet (12.45). Not as bad as the bout that put me in hospital, but it was pretty close for a while. I don’t think he’ll be willing to take the risk.

          Not sure I would either. It’s all very well saying I don’t care if I die on the operating table – turns out, when it’s a real possibility, I do care, after all! Especially as, if he thinks I’m going to die anyway, he might not give it his best shot.

          Yep – I know I’m a cynical sod – with some justification.

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