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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
Views: 446
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Thanks for sharing this Joanne, and you're right, we really have to stand our ground sometimes. More importantly, I'm so pleased for you that you've adapted so well to your treatment, and you're a great testament to others.
By the way folks, Joanne shared with me in an email that she's already pointed a friend's husband in the right direction to be tested for sleep apnoea. The guy has been confirmed as having 'it' and am sure will be thanking Joanne very soon when he feels the benefit from his own treatment :)
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Permalink Reply by Rosemary Kemp on
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A very worrying story indeed Joanne! If you don't comply around here, my hospital report you to DVLA and you lose your driving licence! I remember being told that problems often put down to software faults or difficulties with the hardware are most often actually user error and down to the technician! Will they own up I ask? Probably not! I agree totally that doctors are human and make mistakes. My Dad was a doctor and I know just how true your statement is!
Your'e doing well! Thanks for the warning. Rosemary
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Permalink Reply by Joanne Hollett on
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Kath is correct, my friends husband was actually diagnosed as critical, with his diabetes, excessive weight and having already suffered a heart attack he was in grave danger - although he consulted his GP many times with his symptoms (lack of concentration, excessive snoring, falling asleep at the drop of a hat, often within 10 minutes of getting out of bed each morning after a "good" nights sleep and being unable to work as a result) never considered sleep apnoea it was only after my diagnosis had been confirmed that he went back to his GP to request referral that he was diagnosed. Unfortunately he has not been so lucky with his CPAP therapy and is struggling to adapt to wearing the mask at night, I offer as much support as I can via his wife but it will take time. I realise how lucky I have been in adapting so quickly, I know many people do not. Perhaps for me it was the lesser of 2 evils, I have felt so bad for so long that if someone had told me to cut off one of my ears and I'd improve I would have agreed. I've been very lucky, all I can say to those out there who are struggling is persevere, believe me IT IS WORTH IT!
To Rosemary, yes it is the same here in Liverpool, they say that if your average continues to be less than 4 you have to inform the DVLA and should discontinue driving until your average is above. They actually asked me yesterday as a result of my "non compliance" whether or not I had informed the DVLA. I gave up driving over 20 years ago and I'm in no danger of starting again treatment or no treatment, but it must be very worrying for someone who drives for a living - or whose job relies on them driving.
If as you say problems with software/hardware, untrained technicians are not being acknowledged as a potential risk for poor readings what can we do to improve things? Although I have no wish to get anyone in trouble (I'm truly grateful to my sleep clinic in that I was diagnosed and am receiving treatment) I am anxious to ensure that other people do not find themselves in a position where they lose their livelihood as a result of mis-diagnosis and will do whatever I can to help! Any suggestions as to how we can make more people aware would be appreciated and I'm happy to support our cause in any way possible.
Kath Hope said:
Thanks for sharing this Joanne, and you're right, we really have to stand our ground sometimes. More importantly, I'm so pleased for you that you've adapted so well to your treatment, and you're a great testament to others.
By the way folks, Joanne shared with me in an email that she's already pointed a friend's husband in the right direction to be tested for sleep apnoea. The guy has been confirmed as having 'it' and am sure will be thanking Joanne very soon when he feels the benefit from his own treatment :)
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Permalink Reply by paula jones on
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Good advice,Thanks for Sharing x x
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As per posts elsewhere it bothers me that you suggest there are nights when you have deliberately not used the machine.
From feedback I have from my oximeter I know you should be using your machine even if you go for an unscheduled nod in the afternoon, say.
You've got to realise that having apnoea events is really bad for you and you must try to use your machine. Since I could see my own results with the oximeter 7 months ago I haven't missed a single night.
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I think I told everyone (I ceratinly told Kath) that my hospital suggested that I deliberately take nights off the machine to test whether I thought I needed a new sleep study or not. I certainly discovered that I couldn't cope without the machine and although it cramps one's style (such as when you go away on holiday and have yet another bag to lug around plus concerns about different voltages etc in different countires) we do have to use it all the time for sure. Kath was amazed that I had been given that advice.
Maybe it depends on an individual's reasons for being on cpap but I suspect that both Caveman and Kath are completely right about this!
Rosemary
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Joanne hasn't said she didn't use it Caveman. She said the sleep tech's accused her of not using it and they were wrong (or am I missing something - forgive me if I am?). However, you're so right in saying that we shouldn't even have an afternoon nap without it, as it goes without saying that everytime we sleep we are prone to having apnoeas. I hold my hand up guilty as charged to this afternoon. I was so tired that I nodded off (by accident) on the sofa with no CPAP. I woke up with a start as soon as I realized what I'd done :(
Caveman said:
As per posts elsewhere it bothers me that you suggest there are nights when you have deliberately not used the machine.
From feedback I have from my oximeter I know you should be using your machine even if you go for an unscheduled nod in the afternoon, say.
You've got to realise that having apnoea events is really bad for you and you must try to use your machine. Since I could see my own results with the oximeter 7 months ago I haven't missed a single night.
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I certainly was amazed that a sleep medic would suggest trying nights without a machine :( Apart from anything else, a night with no machine easily brings back all the old symptoms....certainly in my case. I used to call the machine the C#AP machine, but I can tell you, it's my best friend now :)
Rosemary Kemp said:
I think I told everyone (I ceratinly told Kath) that my hospital suggested that I deliberately take nights off the machine to test whether I thought I needed a new sleep study or not. I certainly discovered that I couldn't cope without the machine and although it cramps one's style (such as when you go away on holiday and have yet another bag to lug around plus concerns about different voltages etc in different countires) we do have to use it all the time for sure. Kath was amazed that I had been given that advice.
Maybe it depends on an individual's reasons for being on cpap but I suspect that both Caveman and Kath are completely right about this!
Rosemary
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Yes I agree, but I don't think I'm the only person who has deliberately (as you suggest) not used their CPAP, I believe my circumstances were mitigating and I do not believe that I have to justify my reasons to you, but for the benefit of others in this forum I shall do so... There were 3 nights in total on one of the nights I had an abscess on the side of my nose which made wearing the mask unbearable, the other 2 nights I had a bout of diarrhoea and vomiting both of which made it impossible to settle in bed for more than 10 minutes at a time, therefore it was not convenient to wear my mask, given that I needed to get up quickly to go to the bathroom to avoid accidents. Too much information perhaps - well you raised the question so I've answered it. Good for you that your circumstances have allowed you to wear the mask for 7 months continuously. My reason for posting was to alert people to the fact that when attending for review if they disagreed with the results of the reading they should question it and ask for it to be redone and not just take the first reading as gospel. I am new to treatment just coming into my 9th week, I like other mere mortals will have problems and no doubt make mistakes. I'm posting on here to try to help and support others like me to get the best out of their treatment and not to criticise others shortcomings. We all make mistakes and can't get it right all the time, the lesson is to learn from them and do better next time round. Thank you Caveman for sharing your opinion with us, I just hope you never suffer from an abscess or D&V.
Caveman said:
As per posts elsewhere it bothers me that you suggest there are nights when you have deliberately not used the machine.
From feedback I have from my oximeter I know you should be using your machine even if you go for an unscheduled nod in the afternoon, say.
You've got to realise that having apnoea events is really bad for you and you must try to use your machine. Since I could see my own results with the oximeter 7 months ago I haven't missed a single night.
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Whoops! Sorry Caveman, it was me who'd read it wrong. Let's call it the menopause issues I'm having or the grey matter in my brain not having recovered LOL. My hubby's just shouted out it's none of that, it's the fact that I'm a dumb blond (cheeky thing). Fancy having to have a wretched abscess and diarrhoea to wreck your trial Joanne :( Sounds like the type of luck I have lol. Anyway, the main thing is that you're an advocate for positiveness and in a great position to help others :)
Joanne Hollett said:Yes I agree, but I don't think I'm the only person who has deliberately (as you suggest) not used their CPAP, I believe my circumstances were mitigating and I do not believe that I have to justify my reasons to you, but for the benefit of others in this forum I shall do so... There were 3 nights in total on one of the nights I had an abscess on the side of my nose which made wearing the mask unbearable, the other 2 nights I had a bout of diarrhoea and vomiting both of which made it impossible to settle in bed for more than 10 minutes at a time, therefore it was not convenient to wear my mask, given that I needed to get up quickly to go to the bathroom to avoid accidents. Too much information perhaps - well you raised the question so I've answered it. Good for you that your circumstances have allowed you to wear the mask for 7 months continuously. My reason for posting was to alert people to the fact that when attending for review if they disagreed with the results of the reading they should question it and ask for it to be redone and not just take the first reading as gospel. I am new to treatment just coming into my 9th week, I like other mere mortals will have problems and no doubt make mistakes. I'm posting on here to try to help and support others like me to get the best out of their treatment and not to criticise others shortcomings. We all make mistakes and can't get it right all the time, the lesson is to learn from them and do better next time round. Thank you Caveman for sharing your opinion with us, I just hope you never suffer from an abscess or D&V.
Caveman said:
As per posts elsewhere it bothers me that you suggest there are nights when you have deliberately not used the machine.
From feedback I have from my oximeter I know you should be using your machine even if you go for an unscheduled nod in the afternoon, say.
You've got to realise that having apnoea events is really bad for you and you must try to use your machine. Since I could see my own results with the oximeter 7 months ago I haven't missed a single night.
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Hi KathThe sleep technician "accused" me of not using my CPAP for 17 nights, one was a block of 9 nights which I knew just wasn't true - there is no way I could cope with not using the machine for such a long period, leaving it off for just one night I suffer dreadfully the next day. No, as I explained to caveman there were 3 nights in total and no more, one was due to an abscess inside my nose and as I use a nasal mask it was unbearable to wear, the other 2 nights no use were as a result of a tummy bug when I suffered severe D&V I spent most of the 2 days on the loo and it just wasn't possible for me to wear the mask as I had to keep getting out of bed to go to the bathroom. I DO realise how important it is to comply and I would never intentionally not use my CPAP, sometimes though circumstances dictate otherwise and on these 3 nights I do not believe I had any other choice. I am not fortunate to have a toilet next to my bed - the alternative was a bucket and bowl and even then wearing the mask would not have been convenient!
Best wishes
Joanne
Kath Hope said:
Joanne hasn't said she didn't use it Caveman. She said the sleep tech's accused her of not using it and they were wrong (or am I missing something - forgive me if I am?). However, you're so right in saying that we shouldn't even have an afternoon nap without it, as it goes without saying that everytime we sleep we are prone to having apnoeas. I hold my hand up guilty as charged to this afternoon. I was so tired that I nodded off (by accident) on the sofa with no CPAP. I woke up with a start as soon as I realized what I'd done :(
Caveman said:
As per posts elsewhere it bothers me that you suggest there are nights when you have deliberately not used the machine.
From feedback I have from my oximeter I know you should be using your machine even if you go for an unscheduled nod in the afternoon, say.
You've got to realise that having apnoea events is really bad for you and you must try to use your machine. Since I could see my own results with the oximeter 7 months ago I haven't missed a single night.
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Yes, I get it now LOL. I'm the same - one night off the treatment is unbearable and brings back all the old symptoms. I just cannot believe (although I do, as I know Rosemary doesn't tell porkies) that Rosemary's tech's told her to lay off her machine to see if her apnoeas were cured due to her weight loss. All they had to do was give her another test, but of course it's all about money! She's done really well with her weight loss, but unfortunately weight loss doesn't usually cure people of sleep apnoea once people are diagnosed. Besides, there are small children and plenty of slim people who have OSA. Keep up the great work and hope your sis does too and feel better herself soon :)
Joanne Hollett said:
Hi KathThe sleep technician "accused" me of not using my CPAP for 17 nights, one was a block of 9 nights which I knew just wasn't true - there is no way I could cope with not using the machine for such a long period, leaving it off for just one night I suffer dreadfully the next day. No, as I explained to caveman there were 3 nights in total and no more, one was due to an abscess inside my nose and as I use a nasal mask it was unbearable to wear, the other 2 nights no use were as a result of a tummy bug when I suffered severe D&V I spent most of the 2 days on the loo and it just wasn't possible for me to wear the mask as I had to keep getting out of bed to go to the bathroom. I DO realise how important it is to comply and I would never intentionally not use my CPAP, sometimes though circumstances dictate otherwise and on these 3 nights I do not believe I had any other choice. I am not fortunate to have a toilet next to my bed - the alternative was a bucket and bowl and even then wearing the mask would not have been convenient!
Best wishes
Joanne
Kath Hope said:
Joanne hasn't said she didn't use it Caveman. She said the sleep tech's accused her of not using it and they were wrong (or am I missing something - forgive me if I am?). However, you're so right in saying that we shouldn't even have an afternoon nap without it, as it goes without saying that everytime we sleep we are prone to having apnoeas. I hold my hand up guilty as charged to this afternoon. I was so tired that I nodded off (by accident) on the sofa with no CPAP. I woke up with a start as soon as I realized what I'd done :(
Caveman said:
As per posts elsewhere it bothers me that you suggest there are nights when you have deliberately not used the machine.
From feedback I have from my oximeter I know you should be using your machine even if you go for an unscheduled nod in the afternoon, say.
You've got to realise that having apnoea events is really bad for you and you must try to use your machine. Since I could see my own results with the oximeter 7 months ago I haven't missed a single night.
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