Chronicles of the Heart – Heart Failure is Real…

NB: Another post under the new rules.

Saturday night I went to bed, going through my usual setup routine. Easing my legs under the bedding support frame, trying hard not to bump my ulcer, then putting my home-made wedge under my right leg, in an attempt, not always successful, to keep pressure off the buggerdly thing in the night, which is no fun at all.

Raising the knee break (the hump in the mattress to stop me sliding down), is next, as I elevate the head to maximum before also raising the foot to help the fluid in my legs drain during the night. Then I raise the whole bed to the level of my bedside table so everything is in easy reach.** Sounds contorted, and it is, but it’s the only position in which I can sleep, though when I’ve finished reading I do lower the head slightly.

**If I need to get up in the night I have to do all that in reverse to get out of bed, then re-do it when I get back in. I don’t know how I stand so much fun! Fact is, though, without my clockwork bed (in reality an electric profiling bed of the type you might get in hospital), I wouldn’t sleep at all and I’m extremely grateful for it. Before I was given it I spent 2 years sleeping, sitting up, on the couch.

Anyway, did all that as usual – then the pain hit. Abdominal pain (not my stomach), and pretty damn severe. Took me a while to figure out that it was caused by the fluid from my legs forcing its way into my already-sloshing abdominal cavity (ascites).

Based on how tight my clothes were the following day, that seems to be a pretty safe bet. And, naturally enough, I was peeing for Britain so no, Mr. Consultant, I am not reducing my diuretic dose, thank you so much. Quite the opposite while the demand is so obvious, because if I don’t get rid of this fluid during the day, it’ll be causing more problems at night, and I have quite enough nocturnal problems to be going on with.

Oh, and by the way folks – fluid retention on this scale is not caused by COPD, Stage 3 or not. Can you guess what it IS caused by?

Here’s a clue:-


Psst, it’s Heart Failure and no, guys, it doesn’t make your dangly bits disappear! (Pic courtesy of Wikipedia.) And pleural effusion (as empyema), is what put me in hospital in 2011, at the time my HF was first diagnosed, so why I am having so much trouble with it now being denied I really have no idea. It’s real, I’ve lived with it for at least 3 years. Doctors at APH have no doubt, my nurses have no doubt (it’s the reason why my leg ulcer is failing to respond to treatment), and I have no doubt – so what the absolute fuck is going on?