I can now treat Pulmonary Oedema at home – at last!

What follows is yet another letter to my GP sent two days ago. For new readers not aware of my history, it’s self-contained and self-explanatory. It refers to my most recent hospital admission with another severe bout of Pulmonary Oedema, and my encounter with a doctor who, choosing to ignore 19 years of evidence** has decided, based on no new evidence or tests, that I don’t have COPD.

**Not to mention the 49 years prior to that of bronchiectasis and asthma, chronic bronchitis and pneumonia, that virtually guaranteed I’d develop COPD.

The result was that today I finally got the Salbutamol and Atrovent nebules I asked for. The hospital uses them together to treat Pulmonary Oedema – I want to do the same thing at home in the hope of avoiding (a) winding up in hospital, or (b) dying – a very real possibility, as you’ll see.

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Solving the ambulance-wheelchair problem…

… and also avoiding further damage to my legs (there is no doubt in my mind that the devastating resurgence of Lymphoedema was caused by being deprived of my wheelchair for a week by the ambulance crew who refused to transport it).

Originally the chair was set up to carry a holdall in front of me. Since the growth of the ulcer on my right leg, and the return of Lymphoedema and subsequent bursting of my left, that’s no longer feasible (way too painful and potentially damaging). Add in the dangerously unhelpful ambulance crew who refused to transport my small manual wheelchair (and who also connected me to an oxygen bottle they’d forgotten to turn on!), and it all needed a rethink.

This is it:-

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The “rocket launchers” are my crutch-holders, and the red caps (held in place with black shirring elastic), are to cover the slightly sharp edges where the former plastic mailing tubes were cut to size (PVC pipe of an appropriate diameter would do just as well). I melted the cut edges with a small blow-torch, so that a bead formed, but there are still some sharp spots – this seemed to be the easiest solution, as when applying a flame to plastic unwanted meltdown is always close.

The repurposed bootlace across the seat back is to tension the fleece seat cover (if you spend a lot of time in a chair, they really are worthwhile). I might add a seat-back tensioner (a.k.a. comfort strut), so that the weight of the full rucksack doesn’t stress the uprights (though as they’re designed to support me and to be pushed, that might be unlikely. Still, cheaper to be safe than sorry. Do shop around, though – there are substantial savings to be had. Cheapest I’ve found is here,** 25% cheaper than the next closest.

**They seem unsure whether they’re in stock or not!

I had planned to take enough spare PJs for a month in hospital, as I have no-one to bring in clean ones, but sod that now, I’ll pack one set plus whatever I’m wearing at the time – I can always wear hospital PJs if I’m in for more than a week.**see footnote

Adequate toiletries are a must, as are my electronics and their chargers – my smartphone (Galaxy S3), wifi/3G tablet (Lenovo A8-50 – the best tablet I’ve found so far), and two duplicate Kindles so that I can carry on reading while one’s on charge. The tablet can also be pressed into service as a reader. if necessary. I also need room for my meds, depending on what part of my re-ordering cycle I’m in I could have a small suitcase full, or none, and my rechargeable tyre pump (and charger), to keep my tyres at my preferred 120lb psi (hard tyres make for easier rolling). Obviously, I’ll have no idea how long a stay I’m in for – the shortest to date has been 5 days, the longest almost 7 weeks – and tyres naturally deflate as the CO2 leaks away through the innertube material.

To accommodate all that I might well need an underseat bag as well. Trouble is, these are either way too big for my chair, or about the size of a woman’s purse – both equally useless, so it’s time to have a rummage and see if something I already have can be repurposed in the way the rucksack has – that’s saved me the thick end of £50.

And then we come to the second phase. I’ll ensure I’m in my chair when the ambulance crew arrives, and I will flatly refuse to move – they either take me and my chair, or they return empty and I do all in my power to get them fired. Assuming that their refusal doesn’t kill me…

So, tomorrow, I’ll get the rucksack packed – no point in leaving it empty as there’s no telling when the next crisis will strike.

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**I might have to rethink that, too. My PJs all have shorts because of the damage to, and dressings on, my legs and hospital PJs are long. Like most long PJ trousers they have gaping flies, and unless one wears underwear as well, modesty is hard to cling on to. It will take up little more room to pack PJ shorts than to pack boxers.

The Ciprofloxacin Disaster…

Trigger warning – suicidal drug side-effects.

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My GP prescribed Ciprofloxacin a few days ago to treat potential infection of my resurgent bilateral lymphoedema.

It damn near killed me.

Reading the Patient Information Leaflet (PIL) and the Cipro pages, particularly those covering side-effects and drug interactions, at Drugs.com showed why.

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Bilateral Lymphoedema Returns…

On Wednesday morning, the nurse was horrified by the state of my legs, and phoned the GP surgery to tell them I needed an urgent home visit.

I didn’t get one – I got a phone call instead.

In three years none of my GPs have ever seen my legs – they refuse to look at them because, to quote one of them “They’re horrible!” – I wonder what they think it’s like to have to live with them? With the blood, the pain, the suppuration and the stink? They have no real idea of how horrendous that is. And they sure as hell can’t comprehend the pain.

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Caldo Verde, Tweaked…

Caldo Verde is a peasant dish from Portugal, a soup primarily of potatoes and a species of giant cabbage, traditionally served with a scrap of chouriço sausage and cornbread. This is my high-protein take on it, with a great deal more sausage, soya beans, and served with Tesco sourdough bread. OK, so it bears more of a resemblance to ciabatta than sourdough but it’s good bread for dunking in soup as it doesn’t fall to pieces. Goes well with cheese too.

I don’t think the Portuguese would approve of my less than Spartan version of Caldo Verde, but it was timely, made just hours before the return, on a massive scale, of my Lymphoedema, accompanied by pain at a level that totally overwhelms my morphine, despite the recent doubling of the Oramorph dose.  Part of the treatment for that is a high-protein diet, hence the soup.

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Doctors are Dangerous – Addendum – They are out to get us…

Having just read this post The lies of IDS to his own party… a thought has occurred to me regarding the scurrilous attempts to downgrade and trivialise my lifetime of serious illness as described here.

Am I seeing a deliberate Tory doc attempt to rubbish my benefit claims?

Paranoid? Damn right I’m paranoid – anyone who is chronically ill should be, because they are out to get us, make no mistake about that.

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Doctors are Dangerous…

And yes, I really do mean that.

Every time I’m admitted to hospital – which is likely to happen quite a lot in the future – whichever consultant I’m assigned to puts his or her own spin on what’s wrong with me.

The latest one to do that announced that I don’t have COPD. Yes I bloody well do. COPD was diagnosed in 1996, and that diagnosis has been confirmed and re-confirmed many times since then. Now we have this bloody doctor attempting to re-write history, and change my meds radically, to boot.

I have one policy and one only regarding my meds – if they do their job, do not mess with them! She changed them. I objected on the grounds that if it ain’t broke, don’t fix it. She ignored me. My GP has pushed through the changes without consulting me. That will not stand.

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Getting my life back – Part 637…

Dateline Good Friday 2015… Still offline.

As you might know, I eat just one meal a day, in the evening. The reason for this is that if I eat breakfast and/or lunch I can’t stay awake. No-one can tell me why so I long ago opted for the one meal a day solution – until now.

A few days ago I woke with a craving for Heinz tomato soup for breakfast. As I had a few cans in my emergency soup stash I indulged the whim and had a very productive day without once nodding off. Even created a new recipe (which, if early tastings are accurate,** is remarkably good).

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I haz a new toy – Part 3,786…

The perceptive among you might have spotted that I’m something of a gadget hound. Trapped in hospital recently, without my electronic armoury for the second time, I vowed it would never happen again.

Then, when I got home, I turned on my router to reconnect with the world – which promptly expired with a bang. The router, that is, not the world, though I have little doubt that’s coming.

Now, I have a bunch of tablet computers, but all rely on the router as none have 3G, for example. Only my smartphone (Samsung Galaxy S3), has that and while it works well enough, typing on such a small virtual keyboard, and reading on such a small screen drives me bananas. I do have a wi-fi plus 3G Kindle, but the implementation of 3G is (deliberately?), clunky – Amazon’s Kindle store and little else** – I needed something better while I waited for my replacement router to arrive (for which, of course, Easter got in the way).

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Taking Stock…

I’m re-reading Tom Vernon’s book Fat Man in the Kitchen, in which he rather takes against stock cubes, suggesting that we are committing some sort of culinary crime by not making our own stock. Which, of course, completely ignores the fact that such a labour-intensive and time-consuming task is generally delegated to a team of minimum-wage-slaves in professional kitchens – a luxury that I, for one, do not have. Nor, I venture to suggest, do you.

So, let me reiterate what I’ve said many times before – there is nothing wrong with stock cubes, stock concentrates or stock powders. The important thing is not to let any single component dominate. And yes, I can hear you thinking “But he always starts with Kallo cubes!”. Which is true, but they are very mild cubes (for example one cube makes roughly half the amount of stock as Knorr cubes), which enhance rather than overwhelm the flavours of whatever you put them with.

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