Pulmonary Oedema – the cause at last?

Note: I’ve been up since 03.30 and can barely function, so there might be some typos I’ve missed.

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Among the notional causes of my Pulmonary Oedema, none of which have proven valid in the long term, was one which has proven to be the culprit. Quite early on I suspected acid reflux might be the cause, but dismissed it out of hand as there was absolutely no evidence to support it. Until now.

Woke at 03.30 last night barely able to breathe and – this was new – my nose was streaming with semi-solid white gunk. If you’ve seen a film of a turtle laying eggs – a mucus stream interspersed with white blobs – that’ll give you a good idea. Half asleep, hypoxic, and unable to think clearly, it scared the crap out of me.

I beat a hasty retreat to the living room, sat in my wheelchair (fortuitously it keeps me in the right position), hammered my inhalers and chugged several doses of codeine linctus. Eventually things quietened down and I dozed, fitfully, for a while (my chair isn’t really designed for sleeping).

When I finally resurfaced I had my answer.

The mystery white crap had been cottage cheese, pushed up into my nasal passages by acid reflux. Some, clearly, had also got into my lungs to set off another bout of PO. Had it all got into my lungs I seriously doubt I’d be sitting here now. Aspirating liquid is dangerous enough; given the state of my lungs, aspirating a semi-solid like cottage cheese could easily have killed me.

So acid reflux actually is the cause – but what can I do about it? Very little. I already take a drug to prevent it happening, have done for many years, so why has it become so dangerous?

One factor is the position in which I sleep – sitting up, as I can’t breathe lying down. Then I elevate my legs – and therein lies the problem. Elevating my legs puts pressure on my abdomen, so much so that some nights it makes it hard to breathe, and I have to lower them somewhat. Clearly it also exacerbates acid reflux. Not a lot, obviously, until now (it doesn’t take a lot to screw up my lungs – gastric acid is very destructive), but it’s been dismissed as a cause as I had no evidence for it.

Last night, though, enough of my stomach contents were ejected to show up as “normal” vomit. Mystery solved.

And the question is being asked, now I know what’s causing PO, is it avoidable? The simple answer is no.

Take last night. With that wonderful thing, hindsight, the problem, then, was probably exacerbated by my taking my late-night meds a little too late, so that the relevant drug – Omeprazole – would have barely been in my system in time.

That can be changed by bringing it forward.

Solids in my stomach, late at night, are an obvious danger, which rules out cottage cheese for my supper. I can’t sleep on an empty stomach, though, so unless that proves problematic, I’ll stick with a glass of sherry. At least if that comes back, and it doesn’t normally, it’ll do less harm than solids.

Acid reflux isn’t preventable as it’s part and parcel of the COPD package, and largely unpredictable. I’d never have thought that cottage cheese, eaten for its soothing qualities, would ever turn on me. There are drugs that will reduce the risk, but I’m already taking one. I can double the dose – see if that works.

That, and avoiding things I know cause a problem – just cottage cheese so far, and adding to that list means suffering further attacks, which is downright dangerous.

There is, I’m afraid, no simple answer, though I can start, also, by not elevating my legs. It does bugger all anyway!

Note: When I abandoned my bed at 03.30 ish the usual ulcer pain struck in seconds. I got into my wheelchair quickly, intending to take a dose of Oramorph, when I realised the pain was fading without it. Obviously – though it didn’t dawn on me at the time – my midnight dose was still in my system but here I am, at 09.30, three hours past my normal time, and I still haven’t needed it.

This lends weight to my theory that if I can transfer directly from bed to chair it will reduce my pain. There’s a lot of work involved to make that possible – which is why I haven’t done it yet, and I doubt I’ll be in any condition to do it today, but it has to be a priority.

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4 thoughts on “Pulmonary Oedema – the cause at last?

  1. progress at last of a sort. and i thank you also for putting this in your blog Ron. as i too have what i am told is silent acid reflux, for which i take Gaviscon advance at night… the lansoprazole i take were given to me in hospital to help with indigestion i was getting from the aspirin they insisted i take (in spite of me telling them it affected my breathing and which proved right as my breathing worsened considerably in the first month , virtually stopping me from going more than a few yards before my breathing got so bad i was on verge of collapse until i realised aspirin was to blame. stopped it and breathing normal within days). this was after the heart attack warning (or whatever it was.. they chop n change their minds as to whether i had a warning or a real heart attack… i still take lansoprazole on a morning even though i now don’t take any tablets apart from water tablet/. antihistamine/co codamol/lansoprazole (latter half to 1 hour before breakfast). i also sleep with my feet elevated. not a lot. just on 2 pillows, but lately been getting more cramp so have stopped keeping them up all night. and the fluid doesn’t seem to build up as much. its only left leg around the calf, ankle and top of foot.goes down on a morning but comes up usually quite quickly from when i first sit on edge of bed to take sprays etc… noticed since not elevating legs as much, the swelling takes longer to start building up. is not as tender at the back and doesn’t come up as much as it was doing. so you must be right. elevating does nothing , well certainly not all night anyway,. hope these discoveries make for better,less scary nights for you.

    • You’d be better moving Lansoprazole to late evening. PPI drugs (Lansoprazole, Omeprazole, Pantoprazole, and the rest), are effective for only 12 hours, so taken in the morning (every doc seems to make that basic error), it will be long gone from your system by bedtime.

      Kept the foot opf my clockwork bed flat last night, doubled my Ompeprazole, and slept almost uninterrupted until my meds alarm at 06-00. And that’s not happened since I got out of hospital last August. And apart from a glass of milk, my stomach was empty too.

      All that happened when I elevated my legs during the day was that I got the same pain as I do in the morning. I just couldn’t make the nurses understand that.

      As for the early-morning pain, it just wasn’t a problem. It arrived quickly, as always, but very minor compared to how bad it’s been and, withong 15 minutes of settling in my wheelchair, it was gone – without Oramorph (It’s dressing-change day so, of course, it’s back with a vengeance and Ora has decided not to work!).

      By the way, you can take your inhalers lying down – just raise your head a little.

      • oh dear. i dare not change when i take my lansoprazole Ron. from experience ages ago now, i need them to stop the indigestion. i once had to stop taking them for 2 weeks before i had a certain test.(was for urea levels in my breath…apparently wartime kids (not all but some) contracted some virus or other which never showed up then but did once they reached 60 or so.it showed up in tests for how much urea your breath had in it on exhaling. wasn’t allowed to take the lansoprazole or any other antacids for 2 weeks before the test. within 2 days i had excruciating indigestion (no i don’t have an ulcer ..no symptoms of one anyway) i think my stomach has just got used to my taking that med on a morning. i have enough problems with diet re diabetes/IBS etc… without upsetting the apple cart. i now can enjoy my food most of the time and am back on eating fruit. which i had to stop just before Xmas after a big IBS flare up.i don’t want upset the dietary balance Ive now got. so ill leave well alone… everything but my legs is doing good right now even they aren’t so bad this lat few days. just have to get my sleep pattern a better adjusted. am going to sleep 2am but not waking now till 11am apart from 7am with cramp or needing loo. back to sleep no problem’ but most of the mornings gone by time i get up now.

        • OK. But two things to talk to your doc about. Doubling the Lansoprazole to every 12 hours, and prescribing Altacite Plus – way better than Gaviscon and, even if you had to buy it, a fraction of the price (around £3.50 for 500ml but as you get free scrips no point in paying). What you pay for with Gaviscon, mostly, is their massive advertising campaign!

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