For some years I have been experiencing bouts of Pulmonary Oedema, though I had no idea that’s what it was, I just put it down to more COPD buggeration** – until the day it almost killed me.
**It’s primarily a symptom of heart failure, which I also have.
At that point, once I got out of hospital, I asked my GP to prescribe Salbutamol and Atrovent nebules, as that’s what the paramedics and the hospital use, my idea being to nip the moderate attacks in the bud and, hopefully, prevent severe attacks either hospitalising me or killing me. It took 8 months and another emergency hospital admission before that was successful.
And my pulse oximeter.
The jagged line at the bottom of the screen is a very basic heart trace – all the peaks and troughs should be the same for a normal heart – mine, as you can see, isn’t normal. All 4 pics were taken in about 3 or 4 minutes – this is normal for me and, clearly, all is not well. And it feels much as it looks – as if I have a madly-flapping bird trapped in my chest!
Those of you who read that post will know that I explained to my GP why I needed the following drugs:-
Nebivolol (beta-blocker) as the dose suggested by the cardiologist (half my normal dose), drove up my BP to what I consider to be a dangerous level. Yesterday’s BP was 115/59, for example. For the two days for which I took the reduced dose, and of which my GP was notified, my BP was 145/75 and 147/79. Both unacceptable. I reverted to my normal dose of 2.5mg b.d.
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:-
A View from Bed 3 post…
As people on Twitter might know by now, my day started with a bang when I was hounded out of bed at 04.30 by a bout of Pulmonary Oedema, at which point it had already kept me awake for an hour, my lungs were bleeding quite badly, and it was getting hard to breathe.
Be aware – gross ulcer photo below.
Just had a conversation with my GP. He’s been in touch with the vascular doc, who has said – this bloody obsession again – that compression is the only way forward. I told him, when he asked if I’d be willing to try compression and – these are my exact words – I said “I’ll suck it and see.” That’s all. No promises beyond that, just a willingness to try it and see what happened.
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.
NB: Under my new rules I consider the following to be safe.
Like most people with COPD I’m extremely prone to respiratory infections. Normally, I tackle these myself as NICE, while paying lip service to GOLD, strenuously refuses to allow GPs to prescribe antibiotics in sufficient strength and volume to comply with its needs. So I buy my own.
However, a couple of months ago I had an infection which refused to respond when treated with my normal Amoxycillin, so I faxed my GP and asked for Doxycycline and, a major miracle, actually got it. This week I accidentally ordered codeine linctus. It’s not due yet and I don’t need it. Since I’ve been taking Oramorph I’ve needed codeine linctus only rarely – when it’s a case of take it or cough until I puke or pass out. Normally it would have been crossed out and a snotty note sent with the rest of my meds but I got it without the slightest quibble. This spirit of co-operation is very unusual and suggests he knows something about my condition that I don’t. Worrying.
NB: Another post under the new rules.
Saturday night I went to bed, going through my usual setup routine. Easing my legs under the bedding support frame, trying hard not to bump my ulcer, then putting my home-made wedge under my right leg, in an attempt, not always successful, to keep pressure off the buggerdly thing in the night, which is no fun at all.
Second post published under new rules. See here if you missed them.
Had another bout of Pulmonary Oedema overnight (it’s now 05.40), and, unusually, I seem to have slept through the worst of it. Or was unconscious. And I’m sure I don’t need to reiterate this, but this is a heart failure symptom, not COPD.