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.
Note: I’ve been up since 03.30 and can barely function, so there might be some typos I’ve missed.
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.
In terms of travel, that is.
(NB: I wrote this over two days. If you come across a discontinuity anywhere, that’s why.)
On a more immediate note I started this yesterday (Monday), and it’s now Tuesday, late morning, and things are pretty scary. I just can’t function at all. I’m trying to finish this but it’s taken me hours to add a final couple of hundred words – I keep drifting off and my breathing is very poor. It’s not often my condition frightens me, but it does today. I might have said that – I know I typed it somewhere this morning – I’m just too exhausted to re-read this to try and find it. Apologies if it’s here twice.
If, like me, you have a Volumatic spacer device for use with your asthma/COPD inhalers (and if you don’t you should have – they’re very much more effective than the inhalers alone), you might find, also like me, it tends to fall on the floor rather a lot.
Since my admission to hospital with Pulmonary Oedema (PO), in August, my ability to breathe, especially at night, has been seriously compromised.
Though I didn’t know it at the time, I’ve been having bouts of PO for about 2 years – I just didn’t think it was anything more serious than yet another malign aspect of my COPD. After all, I’ve been coughing blood, from time to time, for over 40 years. PO, though, is just a tad more serious – it’s potentially fatal and it damn near did for me in August.
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.
A “View from Bed 3” post under the new rules.
Last night I reduced my Zomorph (modified-release morphine), from 90mg to 60, to see if it had any effect on my pulmonary oedema (P.O. from here on), attacks. These are happening most nights now, though obviously not as severely as that which put me in hospital (the fact that some nights it doesn’t happen could give me a false negative, but I can’t think of another way).
I took a very carefully measured – as opposed to just approximately sloshed – dose of Oramorph at bedtime, just 10ml which causes no problems.
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.