About

As regular readers will know, I spent quite a bit of time in hospital last year. I had hoped to make it through this year unscathed and unhospitalised, but it was not to be.

I woke last Thursday to discover that breathing was something that happened for other people and, close to death (or so I was assured by a brace of doctors subsequently, and I have no reason to doubt them), I was hauled off to hospital and, some 8 hours later, pitched up in the eponymous Bed 3.

This is the tale of my stay, and space for others, should they wish, to recount their experiences via the comments.

Just a couple of simple rules, don’t name people and don’t be libellous – as I’m the one who’ll get clobbered with a law suit in that event, you won’t be published.

For new readers, this is what’s wrong with me – in chronological order of onset. I know I’ve published this list previously, but not everyone reads every post.

Plus everything here affects, very much, how my Addison’s turns out – see sections headed NB: below.

Bronchiectasis and asthma since age two, when almost simultaneous whooping cough and measles trashed my lungs.

FMS since my late teens. Constant, bad/severe pain in shoulders/neck.

Spinal arthritis (cervical spine) since my 20s. Profound discomfort rather than pain, but that’s increasing, and the noise is deafening.

Osteoarthritis in left hip since age 32. Massively ramped up by being struck by lightning in 1983, now widespread (right hip, both knees, elbows, hands. Feet also very badly damaged (the fatty pads, in the soles, that cushion the bones were melted – my feet literally fried – so every step since has been like walking barefoot on a shingle beach). Pain can be extreme – it NEVER lets up.

M.E. since 1985 (Dx at RLUH 1996). Also a source of intransigent pain.

COPD since 1995/6 with onset of emphysema.

Heart failure. Dx in APH in 2011, but never recorded on my file (of which I have an unredacted copy for that period). Subsequently confirmed by cardiologist, though non-cardio docs try to deny it. Motive? Dunno. Both COPD and the aortic valve problem (next), routinely cause heart failure.

Aortic valve calcification & stenosis. (Dx mid 2011).

Angina, present sporadically since mid eighties. Getting worse. Oxygen-deficiency angina diagnosed at Stockport Infirmary, Summer of 1986 after Peak District rescue. Letter from Stockport ignored by my then GP who refused to accept that anything was wrong with my heart, despite a massive family history of CHD (almost everyone on my mother’s side has died from, or been seriously disabled by, heart disease and/or stroke).

Bilateral Lymphoedema, present but asymptomatic since 2005. Last year severity was off the scale, massively infected and terrifyingly painful. While the infections have been cleared up (took over a week of i-v Vancomycin in November 2013), the pain remains. As do two ulcers on the verge of merging into one larger ulcer. Currently colonised by bacteria but level of pain, the smell, and suppuration more suggestive of infection – new swab sent to microbiology lab this week. There is also an injury, caused by the impact of a large, high-density polyethylene, chopping board, which refuses to heal. Both right leg. Left leg healed but fragile. Both very/extremely painful.

Addison’s Disease. March 2013, admitted to APH close to death after months of diarrhoea, vomiting and starvation (lost 35kgs) – all, I now know, symptoms of Addison’s.

Diagnosed with acute Addison’s almost immediately on admission, based on the huge amount of Hydrocortisone I was given (and with hindsight), but I was not informed at the time (nor, on subsequent admissions, was Addison’s ever mentioned or Hydrocortisone administered in accordance with NICE guidelines – that will not be allowed to happen again).

Once stable, maintenance Hydro only (30mg daily, delivered extremely erratically** while in APH both then and subsequently), until I realised what was wrong in March 2014, almost a year to the day, and having received confirmation of Addison’s agitated for treatment according to NICE , ADSHG and ACAP guidelines.

**Currently I take 20mg at 06.00, along with the rest of my meds, and 10mg at 15.00.

NB: In patients who are normally well, Addison’s need be no more than an inconvenience. For those of us who are chronically sick, especially, like me, with multiple serious conditions, Addison’s can kill, especially if not properly medicated.

Indeed, in the NICE Guidelines they make it quite clear:-

What is the prognosis?

If untreated, Addison’s disease is always fatal.

It seems reasonable to assume that this applies to Addison’s which is only minimally medicated too, as mine was for over a year. Had I not been taking inhaled steroids I’d probably be dead. Indeed, the crash came when I’d reduced my inhaled steroids, which confirms the link to my satisfaction.

I first saw the endocrinologist – though he didn’t identify himself as such or tell me I had Addison’s – while still in the APH assessment ward in March last year. My GP didn’t confirm my Addison’s until March 26 this year, after I’d figured it out for myself.

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