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.

It’s taken a long time – I first asked not long after my first admission with Pulmonary Oedema in August last year, but, finally, I might be in with a fighting chance of surviving the next attack. Doctors names have been redacted as I have no desire to piss them off. I have no desire to see them – the cardio and respiratory docs – ever again, but if I name them it will piss them off and word will get around their colleagues, and them, I might need.


Dear Dr. Xxxx (GP),

I don’t wish to appear confrontational, but I have to say that my tolerance for consultants whose only ambition seems to be to rewrite my medical history is utterly exhausted.

First we had Dr. Xxxx (cardiologist), flying in the face of the majority opinion, and announcing that I do not have heart failure and that all my symptoms can be ascribed to COPD. No, they cannot. Some can, obviously, but not all, not by a long way.

And now we have Dr. Xxxx (respiratory consultant), announcing that I do not have COPD! In fact she has reduced an entire lifetime of serious respiratory illness to a little obstruction.

Between them, these two are very likely to kill me by causing A&E doctors to overlook something vital. They are under enough pressure without having to deal with disinformation of this nature. It’s surely only a matter of time before some genius at XXXX (the hospital), decides that there is nothing wrong with me at all!

COPD and the early stages of heart failure were, as I’ve said before and it should be a matter of record, both diagnosed in or around 1996 (you had me admitted to APH with a suspected coronary, and “severe COPD” in that year), and both conditions have been confirmed multiple times by several consultants. Until now.

As someone who is not exactly uninformed on either subject, I have no doubt that I suffer from both. My nurses are also of the same opinion re heart failure as the cause of my recurrent Lymphoedema and ever-growing leg ulcer. And yet I’m being asked to believe that everyone is wrong except Doctors Xxxx and Xxxx. I’m not buying it.

Staying with the latter, Dr. Xxxx has drastically revised my medication despite my very strong objections that I was doing very well on my existing meds and, if it’s not broken, don’t fix it. She simply said that if I don’t get on with them, I have the right refuse them – which I already knew. And which I do.

I have, despite my reservations, tried her inhalers. THEY DO NOT WORK FOR ME. In fact in addition to being largely ineffective, they (or one of them), caused such a severe intention tremor, and profound weakness, that I could barely function. Its severity scared that day’s nurse, too, and then, and for several days after, I was unable to do my part in the dressings change (we share the load, I do all the preparatory work, the nurses check the wounds and replace the dressings; often, depending on circumstances, I do the whole thing, it’s a system that works well for both sides).

I wish, therefore, to return to the status quo ante – Salbutamol, Serevent, and Clenil Modulite. These, along with Phyllocontin, have kept me stable for years (recent crises notwithstanding), and I see no reason to change, especially when the alternatives are ineffective, and even detrimental.

Thank you.

Yours sincerely

Ronald W. Graves.

PS: Repeat request follows. (This was my repeat prescription request).

And I should like, also, to repeat my request for Atrovent and Salbutamol nebules, please, to enable me to treat these repeated attacks, whether they are Pulmonary Oedema or not (Dr. Leong’s team says yes, Dr. Stephenson, unsurprisingly, disagrees). Her Reg, however, told me in no uncertain terms that these attacks will kill me. I’d much rather they didn’t and, while I know you frown on self-medication, I feel very strongly that these two drugs, as used in APH both times I’ve been admitted, will tip the balance in my favour. I can’t see that this is in any way a bad thing and I would hope that you know me well enough by now to accept that I know what I’m talking about.

I am fully aware that, at 70, I have outlived even the most generous predictions for my life span (in the most optimistic I was told I’d be unlikely to make it past 40), but even if my death is imminent, as I feel it might well be, Pulmonary Oedema – or whatever it is – is a seriously bad way to go.

4 thoughts on “I can now treat Pulmonary Oedema at home – at last!

    • Well, I’ve got the drugs – if they work in hospital, with all the additional stress that entails, they should work here, too. Be even better, of course, if I didn’t need them at all, but if the Registrar is right the chance of that is pretty remote. Still, at least they tip the odds of survival in my favour.

    • Yep! And I get a very strong feeling that someone has taken my GP on one side and had words. From the note he sent on the prescription form he’s clearly very unhappy – still, as long as I get what I need I can live with that. And probably live longer, too.

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