Chronicles of the Heart, Part 56…

Well, I thought I was done with Chronicles, as the last instalment was almost a year ago, but it appears my body has other ideas.

What follows, then, is a cautionary tale for those of you who might be have a similar combination of extreme pain, respiratory malfunction and a dodgy heart. If you need morphine, lungs and heart might well preclude the effective treatment of the pain.

For some months now I’ve been having Continue reading

Screwed by the system…

Lymphoedema sucks, is painful and also dangerous. It could cost me a leg. Or two. Or it could kill me. And even if it does none of those things – well, except pain, that’s always present – it will still make my life insupportably miserable.

You’d think, then, there’d be a system in place to minimise the impact of this appalling condition on the patient. Continue reading

Leg report – and it sucks!

As I reported here, two weeks ago, the staff nurse attending on that day  sprayed saliva into the open lesions on my leg (by talking while she was way too close to it). Last week they were looking decidedly iffy (they looked pus-filled, I have the photos, below, luckily), and the other staff nurse said that they were clearly getting worse. Today, when I removed the dressing, I was Continue reading

Leg has been made worse by change of treatment…

When the Tissue Viability guy was here a couple of weeks ago, he recommended a way to go and, next nurse visit, as I’ve mentioned here, a pushy nurse tried to over-rule him and go with something different. I slapped her down (only metaphorically, don’t panic), and we carried on as suggested.

Last Friday I was persuaded to try Continue reading

Leg report – not 100% happy.

Feeling pretty crap today.  Can’t sleep and way too much pain round the clock.

Since the turn of the year I’ve had no trouble getting to sleep – staying asleep is a whole different ball game. I’ve not slept for more than an hour at a stretch, and often only half an hour. Add in the almsot constant pain,and I’m in grave danger of becoming unravelled

New nurse on Wednesday (think I might have seen her once before), said she was going to tell GP he had Continue reading

My Leg Can Be Healed!

Yep, it’s official, it can be healed. The nurses brought their resident expert with them today. The first thing I learned is that terminology in general use is so tightly focused in their field as to have effectively lost its original meaning.

Take “necrotic” – it simply means dead – dead tissue in a medical context (in the context of Tory politicians it’s the tissue between their ears). However, in the context of lymphoedema it is tightly tied to one specific type of tissue found in wounds.

This must surely cause confusion when they discuss patients with, say, GPs, and it could be dangerous to the patient if there’s misunderstanding.

Anyway – long story short – I have Continue reading

The new treatment for my leg is going well…

The new treatment for my leg is going well…

I know some of the following has already been said, but not everyone reads every post so some repetition is necessary for clarity.

As you can see from the following pics, my use of wet dressings over the weekend (Aquacel Ag plus sterile normal saline solution, as recommended in the PIL), is having a beneficial effect on my lesions. The first pic is last Monday’s, the other is from this morning, after Continue reading

Warning signs and other ramblings, with added food…

Extremely dismayed, in bed last night, to see that my right leg (I have bilateral lymphoedema, for new readers), was once again swollen. Being on my feet much of the day, and up a step-ladder at one point, probably the reasons.

It’s gone down again this morning but clearly a warning sign that I need to take much more care of myself. Trouble is, there are many things I have to do myself because there is no-one else to do them for me like, yesterday, stocking my shiny new fridge freezer, and (the ladder thing), repairing the reflective film on my window (my flat faces due south, that wall is almost all glass, and the sun can push up the temperature into the high 30s without the film – and yes, I do get tired of explaining to the witless that I’m not hiding from aliens, or CIA death rays!).

And, in the next couple of days, there are things I have to do that I wouldn’t Continue reading

Negotiating with the nurses – a farrago of lies and bullshit…

Well, the nurses, and their manager, have been, and I got what I wanted, but only by dint of actually snarling at the buggers, as I could see the dressings I need slipping away from me.

But I finally, got their agreement – and they also confirmed that the hospital had been in touch, when I was discharged in November to tell them that the treatment they had instigated, with Aquacel Ag (silver-impregnated), dressings, had to be continued. The staff nurses and the auxiliaries had previously lied their arses off denying any contact from APH about my treatment.

But when I really lost it was when Continue reading