Pulmonary Oedema – what’s the cause?

I promised myself I’d be extremely circumspect when it came to criticising consultants, but I’ve just read the report from the cardiologist I saw a few weeks ago and it’s absolutely riddled with errors.

And there’s no excuse. I spent days typing up everything I needed to say to him (most of which has already been posted here), so to avoid repetition, I’ll just give you one example.

He starts by saying “He has been seeing our Heart Failure Specialist Nurse…”. Not true. I saw her once, for about an hour.

He also says I was using a wheelchair “because he feels a bit weak”. A complete fabrication – I neither said nor implied anything of the sort.

Knowing he’d ask why I was using a chair, and not wishing to get sidetracked by a long explanation, I put this list together (and you do not get an NHS chair unless you can demonstrate the need). So when, inevitably, he asked, I gave him the list, saying “Everything in red contributes to my being in this chair.” I said nothing else at all, and he asked no questions. It has, as far as I can see, been mostly ignored.

Medical History,

in chronological order.

Ronald W. Graves,

 

Items in red all contribute to my being a wheelchair user. I was assessed and issued with my first NHS chair in 1986.

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

FMS since my late teens (Dx Walton Hospital). Bad/severe pain in shoulders/neck.

Spinal arthritis (cervical spine) since my 20s. Profound discomfort rather than pain, and the noise can be deafening. Audible several paces away, apparently.

Osteoarthritis in left hip since age 32 (Dx Fazakerley Hospital and Birkenhead General). Now also in right hip. Massively exacerbated by…

Lightning Strike in 1983 which damaged many joints. My feet were also very badly damaged (the fatty pads, in the soles, that cushion the bones, were melted – or atrophied – opinions differ, 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 – copy in APH file). Also a source of intransigent pain.

COPD since 1996 (Dx St. Cath’s), with onset of emphysema and Cor pulmonale. (He sure as hell ignored this one!)

Heart failure. Dx in 2011, (Dr. Leong’s team, APH, I believe), but never recorded on my file (of which I have an allegedly unredacted copy for that period). Subsequently confirmed by cardiologist Dr. Newall. Both COPD and the aortic valve problem (next), would predispose me towards heart failure and, of course the antecedents for the former go back to the mid 90s.

That I have symptoms of both right and left-side HF was explained to me at length during my last admission to APH, 14-19 August, 2014, with pulmonary oedema (a steadily worsening problem for much of this year). Despite this, and for reasons that elude me, Heart Failure Nurse Xxxxx denies it exists at all.

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. GTN Spray – not on repeat list.

Bilateral Lymphoedema, present but mainly asymptomatic since 2005. Flare-up in 2012, and last year severity and pain were both off the scale, massively infected (ultimately with MRSA), and terrifyingly painful. While the infections have been cleared up (took over a week of i-v Vancomycin in November 2013), the pain remains. Right leg has large, and growing, ulcer just above the ankle, also 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.

(End)

And from all that he gets “feels a bit weak”? Jesus Christ! What would it take for him to decide I was seriously ill and substantially disabled?

I use a wheelchair for two reasons. (1) Walking, for a whole raft of reasons, causes unbearable pain, and (2) It’s far less effort than walking, even using my manual chair. When walking, I have to both support and move my body weight. Using my manual chair my weight is supported, all I have to do is move it which, indoors, or outdoors if it’s flat, requires very much less effort than walking, and causes little or no pain. Using my powerchair requires no effort at all. It’s not bloody rocket science and it’s bugger all to do with feeling weak.

He has also referred me to an endocrinologist because “he was under him recently”. No, I bloody wasn’t – the guy wasn’t even in the country. I told him this. Did he listen? How many guesses would you like? And this might well be the same endocrinologist who screwed up last year by failing to tell ANYBODY, including me, that I had Addison’s. I can see that appointment going swiftly down the pan!

And the cardiologist’s conclusion is that I have COPD and Bronchiectasis, which is true, and it was also true in 1997 when he vehemently refused to accept that I had COPD, despite the fact that it was diagnosed in 1996 to my certain knowledge, because I remember discussing it at length with my then GP, but it might well have been known to my doctors earlier than that – I can’t be sure. Either way, it was an established fact before I saw this guy.

So now, he cleaves to COPD like a drowning man to a life preserver, his extremely dubious logic being that the hospital cardiologists confused a respiratory infection with heart failure (which I don’t believe for one moment), and that having COPD and bronchiectasis precludes also having heart failure. No, it bloody doesn’t.

Let me be clear – I do not want to have heart failure. Either COPD, or the repeated bouts of Pulmonary Oedema are likely to kill me sooner rather than later (but read on, it gets worse), I really don’t need HF adding to the mix. BUT neither do I want it to be overlooked if it is there, because if I’m admitted to hospital again – and it’s going to feature a lot in whatever future I have – I do not want to die because some overworked A&E doc has overlooked a major condition based on this guy’s denial.

Overall, his diagnoses are:-

Mild aortic stenosis

Severe COPD

Bronchiectasis

Addison’s Disease

Lymphoedema

Walking problems – ? Due to ME

From which it could legitimately be argued that worrying about HF is a tad futile as I already have enough to worry about – any one of the middle 4 could kill me.

And, of course, he’s completely ignoring the Pulmonary Oedema which put me in hospital and almost killed me in August. I’ve lost count of the repeat attacks, as – foolishly – prior to the event that hospitalised me I’d had, and ignored, quite a few less serious episodes. Of course, I didn’t know what they were then and wrote them off as COPD flare-ups or severe asthma attacks, but since my admission I’ve kept notes, and I have had at least half a dozen for sure, and possibly double that as I was still assuming – because of the reduced severity and the fact that bleeding was often absent – that it was COPD even earlier this month. Today I’ve discovered that the indicator is frothy sputum, which can be – though isn’t always, as I’d thought – bloody. Based on that this problem goes back months and I estimate I must have had dozens of attacks before the big one.

And, as I’ve said previously, HF is a cause of Pulmonary Oedema. I thought it was the cause, but it turns out that CHD is also a trigger, but there is no suggestion that I have CHD.

So, boys and girls, if I have neither CHD or HF, just why do I have Pulmonary Oedema?

And why, also – and I asked the consultant this question twice and didn’t get an answer – do I have almost all the symptoms of HF (just one missing), if I don’t actually have HF? How is that possible?

The rest was silence…

So I’ve continued my research, with some surprising results. One can, it seems, have Pulmonary Oedema and not have heart disease at all (never let it be said that my mind is closed!), so I went back to the document I’d downloaded from the Mayo Clinic (my primary source of medical information, but also verified elsewhere), and then to the Mayo website, to give you a link – and found the document had been heavily revised since I downloaded my copy, so I got the new version.

This is the link to the Causes page, and you want the Non-heart-related (noncardiogenic) pulmonary oedema section about half-way down the page.

The first item is the only one that might apply to me, and would explain why so many people in the hospital were worried that I was about to die on them:-

  • Acute respiratory distress syndrome (ARDS). This serious disorder occurs when your lungs suddenly fill with fluid and inflammatory white blood cells. Many conditions can cause ARDS, including severe injuries (trauma), systemic infection (sepsis), pneumonia and severe bleeding.

In fact, comparing the ARDS document on the Mayo website with my discharge notes from the hospital leaves me in little doubt that this was at least a possibility, though terminology differs somewhat, as is often the case between the UK and US. If not ARDS then it has to be HF – we’re simply out of options.

In closing, it’s worth pointing out that I haven’t entirely abandoned the HF theory, simply because far more people, over the last 3 years, and especially in hospital in August, have been in favour of it than have been against it. Am I expected to believe that  everybody is wrong, including an equally well-qualified cardiologist, except this one guy and his nurse? He’s scheduled another echocardiogram and a follow-up appointment in 12 months – I might well be dead by then.

I will almost certainly be dead if I follow his instruction to reduce my beta-blocker by 50% and my diuretic likewise. It’s an insane idea. I take my beta-blocker every 12 hours – the norm is every 24, but I metabolise it very quickly which leaves me unmedicated for most of the day, which is why I take two small doses instead of one large one – and it works.

As for the diuretic, I’ve been taking 80mg in the morning and 40mg after lunch, and I’m still not in control of my oedema. Reducing it to 40mg once a day would be devastating. If I have to buy the drugs myself I am sticking to doses that I know are effective, not buggering about with doses I know from experience are worse than useless.

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