Letter to my GP re Pulmonary Oedema and Heart Failure…

The following letter is going to my GP this morning. Over the weekend I discovered that my previous letter hadn’t been sent – fax transmission had been cancelled – by me. I have no idea why, nor do I have any memory of that, which is deeply worrying.

Names have been redacted as consultants tend to get a tad shirty if their names are mentioned and, while I clearly have no confidence in the cardio guy, doctors do tend to side with each other – a fact that is at the heart, I believe, of many of the problems I’m having.

So, this is the letter:-

Dear Dr. GP,

I’m writing this on Saturday morning as yet another bout of chronic pulmonary oedema is winding down. (Now Sunday, and another this morning too – that’s three out of the last 7 days.)

While these attacks continue it makes Dr. X’s suggested reductions in my Furosemide and Nebivolol seem, at best, seriously ill-advised.

Furosemide:-

Cutting this to 40mg once a day is utterly absurd. For a start, it doesn’t work, as I know from past experience and, in addition, cutting it while I’m still retaining fluid like a human sponge is deeply ill-advised. I tried it for two days – in that time I gained 2.5kg. That this was mostly retained fluid was confirmed the next day, when I reverted to 80mg and lost 2.2kg, urinating incessantly throughout the day. 80mg is the minimum dose I need. Fluid retention is the issue here, not its cause.

Nebivolol:-

His suggestion of cutting the dose by 50% is downright dangerous. I tried it for two days. Prior to that my BP was 127/72. On day one it went up to 145/75, and on day two, 147/79. Day three I reverted to my normal dose, and it came down to 124/67. Those numbers speak for themselves.

There’s also the problem that I metabolise Nebivolol rapidly (it’s a known problem with this drug, which has a naturally short half-life), which is why I take 2.5mg every 12 hours and not 5mg once a day. That works, it’s kept me stable for over a year.

Neither Dr. X nor Denial Nurse seem to want to accept that my high BP that they record is nothing more sinister than White Coat Syndrome, but it is. I have a new, clinically-validated BP monitor, complete with software – I can now prove that the BP levels I’m getting at home are real.

Dr. X said I don’t need a higher dose as Nebivolol was prescribed for heart failure (which he says I don’t have, despite the majority opinion that says I do – see below). However, as far as I know it was prescribed solely for hypertension, heart failure was never even mentioned. What I definitely do not need is a dose that is going to drive up my blood pressure. That, Dr. GP, is life-threatening, and I have reverted to 2.5mg every 12 hours. That is the dose on which I wish to continue.

My Wheelchair:-

As I knew he would, Dr. X asked why I was in a wheelchair. As, in the past, I’ve been sidetracked by this question, I’d gone prepared with a full medical history with the elements that had led me to wheelchair use in red.

My situation, by any measure, is quite serious and disabling enough to require a wheelchair without my having to justify it to every doctor who crosses my path (I was assessed at the Wheelchair Centre at St. Cath’s in 1986 and I’m a lot more disabled now than I was then), but from over 400 words of detailed information, he came to the conclusion that “he feels a bit weak”. That is as insulting as it is crass, and one more reason why I find it impossible to have any confidence in Dr. X.

The other reason is that 18 years ago Dr. X flatly refused to accept that I had COPD,** then only recently diagnosed. Now he says that everything with which I’m presenting can be laid at the door of COPD and, I’m sorry, but how can I be sure he’s any less wrong now than he was then?

**Early this year a young dermatologist, on Dr. Z’s team at C…, smugly assured me that I couldn’t possibly have COPD as I’ve never smoked. (As I was “merely” the patient she clearly assumed I knew nothing – a serious error of judgement.)

She knew this, she said, because she’d taken exams in which it featured (if she passed with that answer then the system is seriously defective). Who on earth is teaching this rubbish, and why are they allowed to promulgate such nonsense? It rather undermines any confidence I might have in any opinions on my COPD status that might be tainted by such unfounded drivel. Smoking is a major cause of COPD, but it is a very long way from being the only cause.

I’m not doubting my COPD – after all, I live with it, and have done for a long time, but it was a shock being told I was at Gold Stage 3 (not disputing that – can’t argue with the numbers), it explains a lot but I do not accept that everything can be ascribed to COPD, especially not pulmonary oedema which is primarily a feature of left-side heart failure.

I asked Dr. X how, if I didn’t have either type of heart failure, I could have the symptoms of both. I didn’t get an answer.

When I was in APH in August, with pulmonary oedema (this, as I mentioned above, has now settled in as a chronic condition, which I’ll come to in more detail shortly), a doctor from cardiology spent a long time at my bedside, explaining in great detail, with diagrams, that I had both left and right-side heart failure, and what this meant for me (nothing good).

Which reminded me that, in 1996 (or possibly 97), I had a talk with Dr. W about the finding, at St. Cath’s, of the early stages of emphysema and Cor Pulmonale. If I had right-side heart failure then, I most certainly still do – it does not go away. In 2012, Dr. Y  was also certain I had heart failure.

But, back to APH in August, and there was clearly a difference of opinion between Dr. P’s team and cardiology as to whose patient I should be. I talked to the ward Sister about this, she got my records, waded through them, and said, with no doubt at all – “It’s your heart.”

Everybody else, from the moment I arrived in A&E said the same thing (they also said I’d die unless I took great care to do as I was told – two different people told me that, and I have no reason to doubt that they were serious – and right). Why would I die? Because of my heart condition – that was made very clear.

So, do you see my problem? A lot of opinions in favour of heart failure, just Dr. X and Denial Nurse against. Frankly, until proven incontrovertibly otherwise, I’m going with the majority opinion.

What scares me, though, is that next time I’m hauled off to APH – and there will be a next time – I do NOT want a potentially fatal heart condition missed by an overstretched A&E doc because Dr. X says it’s not there. I believe he is, on the balance of probabilities, wrong.

Pulmonary Oedema:-

This has been a problem for much of last year and all of this year – but until August I had no idea what it was. I simply assumed it was an exacerbation of my COPD, as coughing blood wasn’t entirely unknown. Now, of course, I know all too well what it is.

As I said, it seems to have settled in as a chronic condition, as I’ve had well over a dozen bouts since August. I’m not sure exactly how many, as I didn’t start keeping a record until September, by which time I’d begun to realise it was probably here to stay.

None have been as severe as that which put me in APH, and I have found a way to get them under control. It means mega-dosing with my inhalers, effective, but I feel that the treatment I had in APH – Salbutamol and Atrovent simultaneously, via a nebuliser (one ampoule of each – not mentioned in my discharge notes,** which is unhelpful), would be very much better, and I really would appreciate it if you could prescribe those for me (I have a new nebuliser and it’s easier to use than inhalers when my breathing is so severely compromised).

**So loaded with factual errors as to be mostly useless. I did not, for example, have several days of i-v Furosemide. I had one i-v bolus, and the same of Hydrocortisone, in A&E. Once on the ward, all Furosemide was oral.

I think O2 for these emergencies would be invaluable, too. The drugs and O2 would (hopefully), keep me out of hospital – which might even keep me alive (the bay system, as even the nursing staff acknowledge, being perfectly designed for cross-infection by patients with no concept of hygiene). Everybody wins, especially me.

I know Dr. X has suggested that I be referred to a Chest Clinic, but the way the NHS is being trashed it could well be next year before I get an appointment – I do not feel it would be safe to delay addressing this problem, given that pulmonary oedema is potentially fatal. I really would appreciate your help in dealing with this matter.

Thank you.

Yours sincerely,

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