Hello everyone,
I thought I would share a recent experience with you all in the hope that it will be of help to some of you. I have just completed my first 8 weeks of therapy using the CPAP and I have personally been delighted with the improvement it has made to my life and well-being.
Imagine my surprise therefore, when I attended my sleep clinic yesterday for my first review, to be told that I had not complied with the treatment. The reading showed that I had not used the CPAP for a total of 17 nights (9 of these were in a row) and they were unable to give me my average.
I am lucky in that I have worked for both the NHS and University of Liverpool (Medical School - working for hospital consultants in research) since I was 20 (I'm now 56) and although I was brought up in an era where my elders believed that what the doctor told you was gospel and what they said should unequivocally be followed and never questioned - I know different and always question everything I am not sure of. I am fortunate in that I adapted to the CPAP straight away and other than the odd occasion of leaking mask (solved by repositioning either myself or the mask), the odd "damp" face, and the odd "sore nose" (the latter relieved by the wonderful moisturising cream available from the the hope to sleep shop), I have had few problems. I have also kept a sleep diary and I knew without shadow of doubt that in total I had not used my CPAP for 3 nights and definitely no more. I am not sure how it works in your areas but apparently in Liverpool if you are deemed not to comply with your treatment regimen they can take the equipment off you! Well, I would have walked over hot coals and broken glass before I allowed them to take mine away...
So I challenged them! When the sleep technician recovered from the shock she went away to get another reading and lo and behold the second reading showed that I had not used the CPAP for 3 nights only and my average was 5.9 (apparently it has to be over 4).
My advice to you is this, gone are the days when doctors and the medical profession in general were Gods, they are after all only human and as such liable to make mistakes. If you doubt the accuracy of the reading question it and ask for it to be repeated. As a result of yesterday I have now been told I need not return for 12 months unless I have a problem, and naturally my machine came home with me!
As I left the clinic I spoke to a gentleman who had seen the same sleep technician (he was at the clinic when I first attended to pick up my CPAP & remembered me), the gentleman told me he was very confused, he had not adapted to the treatment at all and through his first 8 weeks told me that he had only used his CPAP for a total of 5 nights - but his reading showed he had not complied for only 14. Something is seriously wrong somewhere.
The reason (excuse) I was given was that it was a problem with the software, I'm not sure if this is true or whether it is a problem with the sleep technician analysing the data - whatever, I'm happy I have my machine back and that I feel so much better because of it.
I just wanted to alert you to my experience in case something similar should happen to you - I implore you, keep a sleep diary and if in doubt ASK!
Happy sleeping.
Joanne