In two days time it will be the first anniversary of my admission to hospital, arguably just a few steps ahead of my death from starvation.
I think it’s fair to say that while I am vastly improved now, I am by no means fully recovered, and I probably never will be. This situation has not been helped by my being kept in the dark by the very people whose job it is to keep me informed upon all matter relating to my health – my doctors. As a result, these pages have often been filled with speculation, on my part, as to what the hell was wrong with me, what is still wrong, and why I almost died? And why, in the absence of detailed information and support, I could have done so at any point since then. Finally, I have an answer.
I have Addison’s Disease.
Addison’s is a failure – partial or total – of the adrenal glands, whose task it is to produce a range of hormones, the most important of which is Cortisol, the lack of which causes, among many other things, massive loss of appetite and death. The former I experienced at first hand, losing 31kg, the latter I narrowly missed. And had I not been overweight to begin with I wouldn’t have.
While in hospital I was fed large doses of hydrocortisone, which didn’t strike me as strange – steroids have been a major part of my meds for decades, and are probably why my adrenals packed up, but see below for more thoughts about that – and have been on a maintenance dose of 30mg a day ever since. This, I’ve recently discovered, is the SOP for Addison’s.
The high doses were, in fact, to treat acute Addison’s, the maintenance dose to keep me alive.
This is based on extrapolation from observed facts (most of which, due to the intensity of the crisis over the past year, slipped by me at the time), and a load of research over the past week because – and this seriously pisses me off – this has never been discussed with me by consultants or GPs, nor was the fact that missing hydrocortisone, even for one day, could seriously harm or even kill me, ever mentioned.
There is no support in place, and I am not being monitored in the slightest degree. I mentioned this to the nurse today – she is going to have words with my GP.
I have a memory, from hospital, from the consultant – the weirdo with the bowel cancer obsession – of a solitary mention of adrenal insufficiency, mentioned only in passing as he paused for breath in his unremitting campaign to bully me into a colonoscopy. And that was it. No mention of Addison’s** by anybody. Which leaves me with a question – Why?
**And yes, I do know – now but not then – that adrenal insufficiency IS Addison’s.
I now know, I believe, what the trigger was for the crisis. As my disability worsened I became less and less active, which meant that I could reduce my meds. My inhaled steroids, to be as effective as I needed them to be, were set at a level high enough to cause systemic side effects** and, no doubt, that level also compensated for my failing adrenals. Fast forward to 2012, though, and when I cut back on that inhaler, I crashed in flames. That’s the only possible explanation, no other has presented itself, and, until now, it has completely eluded me.
**My then GP gave me an argument when I pointed this out. A few weeks later, in the middle of the busy waiting room, he publicly apologised and admitted he’d been wrong. I can’t see the present incumbent ever doing that!
And the more I learn the clearer it becomes that, on admission to hospital a year ago I was treated for an Addisonian crisis. It also marked the start of the i-v fuckuppery that plagued me until November last, when I finally put a stop to it.
For some reason my veins object – extremely painfully – to i-v cannulae, frequently becoming blocked. I tend to view this as dangerous (creating blood clots which might then break loose and wreak havoc seems a pretty poor idea to me, but nurses and doctors couldn’t give a shit. It’s also a valid reason for rejecting a PICC line. This injects drugs very close to the heart. A clot forming there would almost certainly be fatal.
Another thing. While Addison’s is safely manageable, in patients who are otherwise well, in patients who have other complicating illnesses it can be dangerous.
And oh, look, that’s me.
One of the things I need most to avoid is stress, and as regular readers will know, in this building, at this time, avoiding stress is quite impossible.
That also explains why last week’s outing, being more strenuous than was anticipated, did so much damage is so short a time. It totally wiped me out.
So what I need to do now is write a letter to my GP – framed so as not to piss him off while making him understand how pissed off I am! And asking for an explanation.
In the meantime I’ve registered with MedicAlert and ordered one of their bracelets. I was thinking of a pendant but, as I routinely wear T-shirts, that wouldn’t be too obvious, but paramedics and ambulance crews routinely grab for a pulse, so I thought a bracelet was a better choice, and ordered one of these. OK, 50% chance they’d grab the wrong wrist, but it’d be found in A&E and, anyway, that would only be a problem if I was unconscious.
Takes me back to the Sixties!
One last thought. I was put on a high-protein diet a year ago. I thought that this was because of my starvation and, once my weight normalised, in the absence of any advice to the contrary, I reverted to a normal diet.
I was wrong.
I’ve just discovered – minutes ago, while typing this – that hydrocortisone depletes the body’s protein stores and THAT is the reason for the high-protein diet, and I should still be on it. Starting today, I will be.
But, once again, this is information that I should have been given in hospital, in writing, given the state I was in (I was barely functioning). I was told, and given nothing. And once I was discharged there was no follow up by anyone, especially not by my GP, to check I was still on my high-protein diet.
By the way, there is no reason why I shouldn’t continue with my reversion to vegetarianism, which is going quite well, though I shall include a little meat and fish to be on the safe side. I have sausages in the freezer that need to be eaten so, tonight, I’ll be having Lorne sausage and eggs, with curry sauce. Not exactly haute cuisine, but very tasty.