And, dear god, am I getting sick and tired of writing letters, trying to stir the useless bastards of the medical profession into action, before they kill me through neglect.
I last wrote to this guy, who I’d initially tagged as one of the good guys, on March 14, explaining that if he wanted me to attend for tests, or anything else, that I had only a very narrow window of activity on a good day – I simply cannot be at the beck and call of the appointments office, that’s never going to work. But at much greater length, in much more detail, and more polite!
Result, total silence for 6 weeks. That, when I have a condition which is going to kill me sooner rather than later, simply is not fucking acceptable.
So I’m sending this tonight or tomorrow night** – or whenever I feel well enough, really, in case he says go and see him tomorrow. OK – fat chance, but you never know.
**I can only fax at night, there’s only one line and, during the day his secretary is too dumb to switch fax calls through to the machine – she just shouts at the white noise.
Dear Dr. Nxxxxx,
I’m rather concerned that I have had no response to my faxed letter of March 14 (in re yours of March 7).
I went to great lengths to explain why I had been unable to keep several appointments and why, except within clearly defined margins, imposed by illness and disability, that’s a problem, which has been with me for a long time and isn’t going to go away.
From my perspective, though, even without further tests, my heart condition is surely treatable with more success than currently, because right now I am barely holding my own.
I have tried increasing my Candesartan to 8 mg – hardly a massive dose – but the blistered rash caused by 4mg rapidly became very much worse, and extremely painful. I have now reverted to 4mg.
However, while at 8mg it was far more effective. I’m normally aware of my heart clattering along like a broken-down sludge-pump, throwing PVCs seemingly every few minutes – an event that shows on my pulse ox trace as a brief flat-line,** but while on 8mg I was aware of – nothing. I felt almost well for 2 days, but it’s a nasty drug in terms of side effects, which are becoming intolerable.
**And no, that’s not a user fault, it’s all too real, and it would be a mistake to think otherwise.
Last Friday, however, I vacuumed my kitchen floor – an area about the size of a child’s bed. Saturday I felt so desperately ill I thought I was going to wind up in hospital, at the very least – by midday I was convinced I was going to last the day.
Frankly, I should have been in hospital, but after my last stay in APH they’re never getting their hands on me as an in-patient again. Never have I met with such staggeringly dangerous incompetence as in those 4 days last year. Believe me when I say that the only reason I haven’t hauled APH into court is that my records for that period are a work of fiction. I am assured they are unredacted. If true, the incompetence extends to record-keeping too.
Luckily, I did last the day, improved slightly by evening, and I’m recovering slowly.
What I urgently need, though, is something more effective than Candesartan, which might conceivably get me back on my feet, and which isn’t going to turn on me and trash my health from another direction. Or a combination of drugs, perhaps. Not least because the diuretic effect of the Candesartan-Furosemide combo, previously extremely efficient, is currently doing little or nothing. In addition, I have, over the past few weeks, developed excruciating cramps in my feet and, to a somewhat lesser degree in my hands. Something clearly needs to be done.
For that to happen I need to see you – and that’s not happening, and for me to be excluded from vital medical care because it’s possibly inconvenient, is so far beyond unacceptable it’s in a different universe.
I cannot, as I’ve explained, simply turn up when the APH appointments system says I should. I’d like to, but it’s simply not possible. Which appears not to matter at all, so I can only assume, Dr. Nxxxxx, that the lack of interest in accommodating my various illnesses and disabilities, and the limited level of activity imposed upon me by them, means that Arrowe Park Hospital Cardiology Dept., or, perhaps, the hospital as a whole, I really don’t know but based on past experience it is probably so, has no intention of meeting its obligations under the terms of the Equality Act.
Rightly or wrongly – and I doubt I’m wrong – I feel as if I’m dying (and I remember when I said that, based on what I’ve read, I probably had a year or less, you didn’t give me an argument). As each week goes by, my ability to do what little I can do diminishes, and I feel that in a very short time I shall have no alternative but to become a full-time powerchair user – honestly, it’s only bloody-mindedness that’s holding back that day. That and the fact that there would be no way back once that step is taken.
And yet it appears, as has happened more times that I care to remember since I moved to Wirral in 1984 and fell into the clutches of APH, there is no help to be had, and I really would love to know why.
Perhaps it’s high time I sought legal advice. Let’s face it, nothing else seems to work.