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.
Anyway, a little late at 04.00-ish, but well within its usual timeframe, I’m woken by my breathing shutting down.
Now the problem is, it can be hard to tell P.O. from a severe asthma attack, but as I haven’t really had one for many years** I have to assume – for the sake of survival – that these attacks, new this year, are P.O. until and unless proven otherwise, especially now that I know that, while bloody and frothy sputum is a major indicator, it’s not always present and its absence means nothing in terms of a diagnosis.
**Asthma is a reversible airways obstruction – which is to say using the appropriate drugs will relax the bronchospasm. The deeper one gets into COPD, the less reversible this component becomes. Now at Stage 3, this is unlikely to be a factor and it’s safe to assume this really is P.O.
I now have a Volumatic spacer, plus Salbutamol, Serevent and Clenil Modulite inhalers on my bedside table, so that I can megadose. Last night this was 6 squirts of each, via the spacer. Sometimes it’s more.
Then I went online, as a distraction from the fear (sometimes it even works), while I waited for the drugs to kick in (takes 20-30 minutes for Salbutamol, the rest a little longer. Even had I been able to sleep, doing so might have been dangerous.
Long story short, with no further intervention from me, my breathing became easier and I was able to go back to sleep until my meds alarm at 06.00.
So, although I can – so far – control these attacks, my breathing never seems to return to how it was – there always seems to be some permanent deterioration afterwards.
Of course, that could just be me over-reacting, but if the deterioration is real, and I honestly can’t be sure, then there, quite obviously, is a limit beyond which it will prove fatal.
The bottom line, though, reducing morphine does NOT prevent these attacks – it just causes me a great deal more pain.
On a different, but related, note, the cardiologist I was bitching about yesterday has asked my GP to refer me to a chest physician, to asses “…the degree of fibrosis, etc., which could have occurred with bronchiectasis…”. Given that this is the same guy who refused to accept that I had COPD 18 years ago, and that I’ve had bronchiectasis since the age of 2, I venture to suggest that this is just a bit too fucking late!
The condition is called Pulmonary Fibrosis, and is the scarring of lung tissue as a result of inflammation and infection, and I know for a fact that x-rays were showing such scarring 30 years ago and more so, by now, I’m doubtless much worse. And there’s no cure.
No matter what the physician finds, the only real fix is a lung transplant (source: The Mayo Clinic), as there are no meds that have proven effective in the long term (not, I suspect, that I actually have a long term to worry about).
As I’ll be 70 in a fortnight, I sincerely doubt I’d be offered a transplant even were one available, nor would I accept it if offered. Let it go to a younger person who can make more use of it.
Then there’s the question of whether I can keep an appointment. I missed one a fortnight ago, because I’d had a bad P.O. attack the previous night, which had carried over into the day (and I wasn’t as good then as I am now with my DIY approach). Even if I’d remembered the appointment – they’re supposed to phone a few days prior and remind patients, but they didn’t, not that it would have changed anything – I didn’t have sufficient breath to phone them and cancel.
Time was, on the very rare occasion I missed an appointment, they’d offer me another. Now, the sicker I get and, in consequence, the more I miss (which, to be fair, isn’t many), the more intolerant they get, and I just get dumped. They appear to be too stupid to realise that many of the people they deal with are very seriously ill. But do they cut us any slack? In your dreams. And no, I don’t expect preferential treatment – I expect all seriously ill patients to get a bloody sight more consideration than we do.
Whenever I have to book an appointment, I always tell them that I need one as late in the morning as possible,** and even then I simply cannot guarantee being able to keep it.
**Because it can take me as long as 4 hours to get ready. So if I had a 09.00 appointment (which is what the vascular clinic offered), I would have to be up at 05.00 which, as my meds don’t start until 06.00 and aren’t really in my system for a couple of hours afterwards (a major problem for me and modified release drugs), is quite impossible.
“Oh, OK – so can you let us know a few days in advance?” is the inevitable reply.
“Well, no. Because I don’t know until the day arrives how well – or otherwise – I’m going to be.”
Might as well save my breath – they simply don’t care.
And as I said, if I do have significant fibrosis, which is extremely likely – unless they can produce another nurse who can magically make it go away – I’ll be no less screwed if I don’t keep the appointment than I am now.
I’m amassing a huge database – mainly sourced from the Mayo – after years of online research they’ve proven very reliable and honest (not every medical website likes to dip its toe in the murky waters of Prognosis) – of everything serious that I know to be wrong with me, added to, as with Pulmonary Fibrosis today, when something new turns up.
I have to say, it’s a mystery to me that I’m still alive. With or without bloody heart failure!