An update on how things are going. The last week, I haven’t been getting on with the machine at all, to the point that for two nights I unplugged the thing and slept without CPAP at all.
In the meantime while I have been waiting for a response from Papworth to my calls, I have been googling, and have discovered a UK company who can supply machines, masks and other accessories.
A good few years ago, when the CPAP machine I had from Papworth was “luggable” rather than portable, I spoke to them about purchasing my own machine, and was told categorically that I couldn’t and still receive care from them. As some have suggested, things have changed since then, and the UK company have told me that although I require a consultant’s letter to purchase my own CPAP machine, they have done this for other Papworth patients without problem. Note that this UK company wasn’t around back then (or at least, had no web presence) – I was looking at buying from europe or the US.
Anyway, as of this morning, we had identified a machine from the UK company that would suit my needs: small, light, quiet, without “exhalation relief” (a new feature, that I have never had, and don’t need, and is the source of the annoying warble in the current machine), and with extensive reporting, which means I can provide Papworth with all the data they need for my care.
As of this afternoon, I finally heard back from Papworth, who told me my case had been passed to a consultant, and I should hear back next week.
So either I am going to get some action from Papworth, and an alternate machine, or else I’ll be asking them for a letter that will allow me to buy my own.