Dear Dr. X,
I am also sending this letter to Dr. XY, as I think I need you both on board.
Since getting out of hospital, I’ve had 5 or 6 repeat performances of that which put me in there. Not as severe, and not all with bleeding lungs (so some other cause for those perhaps, not pulmonary oedema – like heart failure). The most recent, and worst, last night.
A repeat, almost, of the day I was hauled off to hospital – but, as I say, without the bleeding. Apart from that, the experience was little different. Not as severe, or I’d be sending this from APH, but severe enough to scare the hell out of me.
I managed to get to the living room (I know it’s just a few paces – that’s often beyond me), where I keep my inhalers and big Volumatic spacer – I have a second set bedside but with a much smaller, less effective, spacer – the Volumatic seems to be hard to find these days. The Volumatic allows me to inhale multiple squirts of inhaler in one breath – invaluable when breathing in is at a premium. As, indeed, would be my nebuliser – if I had anything to put in it.
Salbutamol nebules used to be on my repeat list, but repeated errors – I’d ask for Ventolin inhalers, I’d invariably get nebules – eventually made me give them up. And, at the time, the benefits were really not that great. That’s changed.
Based on my recent experience in APH, there are two things that I need for medical support at home if I’m to survive these repeated attacks. And that’s not hyperbole – I seriously believe that one day soon, one of them will kill me – I’d rather it didn’t:-
1. Domiciliary oxygen is a must for these nocturnal emergencies (its efficacy was amply demonstrated in APH. I don’t care if it’s by cylinder or by concentrator – but it is essential. I am fully aware that my numbers do not support O2 for full-time use (but nor do they reflect how hard it can be just to breathe at times) ** – I’m not asking for that, therapeutic though that proved, too, but for these emergencies it could be a life-saver.
**My SpO2 has been steady at 91% since leaving hospital. This morning it was down to 88%.
2. I would also benefit from what I had in APH – Salbutamol and Atrovent nebules – one of each in combination. Very effective. And, again, for emergency use.
Without oxygen, and these additional drugs, I believe my chances of surviving these repeated attacks are low.
Nor do I want to spend what’s left of my life being shuttled in and out of APH, with its attendant risks of infection and the seemingly endless moronic attempts on my life.** One day I won’t spot the drug overdose, or the air bubble in the i-v line…
**Last time in there a nurse, who is surely in the wrong job, gave me 20mg of Nebivolol as a single dose (instead of 2.5mg). Had I not been in the habit of assiduously checking everything I’m given (errors in dispensing are far too common), that might well have killed me. Pretty much every time I’m admitted something equally stupid and potentially lethal happens.
I have the knowledge to be able to handle this, safely and effectively, at home. I hope that you are able to support me in this. Without it I have grave doubts about my survival in the short to medium term. A long term view is, I think, overly optimistic.
Ronald W. Graves.