NB: Under my new rules I consider the following to be safe.
Like most people with COPD I’m extremely prone to respiratory infections. Normally, I tackle these myself as NICE, while paying lip service to GOLD, strenuously refuses to allow GPs to prescribe antibiotics in sufficient strength and volume to comply with its needs. So I buy my own.
However, a couple of months ago I had an infection which refused to respond when treated with my normal Amoxycillin, so I faxed my GP and asked for Doxycycline and, a major miracle, actually got it. This week I accidentally ordered codeine linctus. It’s not due yet and I don’t need it. Since I’ve been taking Oramorph I’ve needed codeine linctus only rarely – when it’s a case of take it or cough until I puke or pass out. Normally it would have been crossed out and a snotty note sent with the rest of my meds but I got it without the slightest quibble. This spirit of co-operation is very unusual and suggests he knows something about my condition that I don’t. Worrying.
That sort of worked but, within days of finishing the course it was back. So I reverted to Amoxycillin, at 1g every 8 hours. Took that for a month, then tapered off – back it came. Another month and this time tapered off followed by a prophylactic dose of 1g every morning, reducing last week to 500mg and this week to nothing.
So far, so good.
And, that, NICE, is what it takes to knock down what was a not too severe infection, demonstrating that your preferred 7 days worth of something week and ineffective is a waste of everybody’s time and actually a health hazard.
If you’re going to implement GOLD, bloody well do it properly!
The Pulmonary Oedema mystery:-
As you might know, pulmonary oedema is what put me in hospital in August, since when I’ve lost count of the more minor attacks I’ve suffered since I was discharged.
I was certain that I’d identified several food triggers for the attacks. The one that nearly killed me was caused by pigging out on Jaffa Cakes (repeated while in hospital, which confirmed it), and at home it’s been triggered by chocolate, cheese, chocolate-flavoured and sweetened cottage cheese (home made**), buttered slices of fruit cake, and home-made peanut butter – all of those have been followed the same night by bleeding lungs, frothy sputum and a feeling that I was drowning in my own bodily fluids, plus extremely seriously impaired breathing (I’ve discovered that megadosing with my inhalers, using the large Volumatic spacer, restores some measure of control, sufficient to keep me out of hospital).
**Stir Cadbury’s “Hot Chocolate In An Instant” powder, plus golden caster sugar, both to taste, into a tub of cottage cheese (I find Sainsbury’s Natural, 6% fat, has just the right level of cream for this). That’s it. Cocoa might be worth a try, too
Last night, not having had an attack for about a week, I was struck by a craving for chocolate cottage cheese. So – perhaps foolishly – I made some just to see what would happen. Trust me, when everything in your life that’s ever given you pleasure (except for food – if I’m going to die, I’m not going hungry!), is either proscribed medically or physically no longer possible, risk-taking seems a minor consideration.
Around bedtime I developed left-side chest pain, non-radiating, and in the wrong place to be angina (though angina does tend to make up its own rules), and not severe enough.
Anyway, distracted by the pain of getting ready for bed, it was forgotten about and, unnoticed, faded away. And also distracted by trying to read in bed while the drugs were trying to push me down into sleep,** I forgot to worry about the possibly impending disaster until I woke at 06.00, to take my first meds of the day, after an uneventful night. Though of late I’ve been waking with a killer headache for some reason.
**Amitryptilline as part of my pain control regime, Oramorph, ditto, and my ACE inhibitor, Ramipril all, individually, cause drowsiness. Taken together, at night, they make it impossible to stay awake. I’ve been reading in bed since I was 3, and to suddenly find I can’t is immensely frustrating.
So, the question is, after last night’s anticlimax, are my P.O. triggers real or just coincidence?. I know Jaffa Cakes are real, and a 200g block of Fruit and Nut Dairy Milk is real too, but what of the rest?
I might never know the answer to that because pushing the boundaries with P.O. is way too dangerous – it can kill.
Since my Addison’s was confirmed, I’ve been taking my Hydrocortisone according to the guidelines. However, some sources say the dose should be according to body weight and, when Hydro was first prescribed I was suffering from starvation (Addison’s-induced anorexia, though I didn’t know it at the time), and had lost 35kg. So now, having regained much of that, I’m probably under-medicated.
As an experiment, instead of adding 20mg of Hydro to my standard 30mg in times of stress – given everything that’s wrong with me, and the pain and worry it causes that’s an almost permanent state anyway – I decided a few days ago that adding the 20mg routinely might be a good idea, and so it’s proved. The improvement isn’t dramatic, but it’s there. The fact that I’ve just churned out over 800 words on a whim is proof enough for me – of late I’ve had to fight for every word. Today, while still not back to normal, it’s very much easier.
Note: If you’re familiar with steroids via Prednisolone, Hydro is roughly 20% of its strength and the risks are proportionately lower. As, indeed, are any respiratory benefits which, while minor, are still worth having.
Writing to my GPs:-
Finally, I’ve given up hope of getting a reply to the letter I wrote to the senior partner (who’s the resident heart expert), about the dangerously inept denial of my heart failure, I’m going to have to take the initiative and ask him where the proof is, because I’m not seeing any.
And, of course, the fact that I have all but one** of the symptoms for both left and right HF is being conveniently ignored by the deniers. That’s not acceptable – I want an explanation, preferably in writing, as to how I can possibly have the symptoms and not have the condition. Death is a symptom, too – would they deny that?
**And that’s an enlarged liver. Mine might be. Equally, it might not. No-one has looked.