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recently moved from Australia....now under NHS in UK...... Shock!
I have recently moved over here with my Resmed S9 Autoset machine having been diagnosed with moderate to severe sleep apnoea in November 2012 with desaturations to 84%. When i arrived for my first appointment with sleep centre in Uk |(NHS) they asked where my machine was? I told them i hadn't been asked to bring it however here is all my data on my SD card. Sorry but they don't have the facilities to read this data.They can only interpret data from their machines and their machines don't change pressure automatically like mine does. They said they will do a "sleepy score test" and see me in a year. The sleepy score test remained the same as BEFORE i was diagnosed with sleep apnoea so hardly accurate. Thankfully i gave them data printed out from Australia so they took a look at that and said to come back in a year.They also said I may even find that if i lose weight i won't need the machine anymore. I am 76kilos and my specialist in Australia said it had nothing to do with my weight. It was the tone of my windpipe and anatomy and i would be on my machine for life and the condition worsens over time without treatment it doesn't get better. . So i came away feeling rather disconcerted. The sleep centre also recommended i purchase distilled water for my machine and not use mineral water. I have since found out from a pharmacist that distilled water hasn't been around since the 70's. Purified water is fine, where does everyone else buy their water for their machines? If i do go private now i really don't want to undergo another sleep study as i was hoping to find a centre that could just interpret my results from the SD card and go from there. Any thoughts? Much appreciated.
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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Hi Suzie, and I remember when we spoke via email before you came back to the UK (and welcome back by the way) that you'd find the system very different, and it's different again in the USA. Unfortunately, many clinics only supply basic fixed pressure CPAP machines and rely on how a person 'feels' rather than viewing the data to check how well we're being treated. People who wish to have more sophisticated machines tend to purchase them direct from the manufacturers. I would hazard a guess to say that around 75% of clinics supply fixed pressure (or auto sometimes only in certain circumstances) and the other 25% do supply APAP or data-capable machines.
Regarding losing weight for a cure, I certainly hope they haven't raised your hopes too high, as there is only a small percentage of people who do get cured from sleep apnoea through weight loss. In fact I wrote an article on this a while ago http://www.sleepapnoeablog.com/obesity-weight-problems/
If you're using one of the newer models of machines, like the Respironics System One RemStar, Resmed S9, Fisher & Paykel Icon or Devilbiss Intellipap Auto (known as Sleep Cube in the UK) then you can use the free Sleepyhead Software to view the data yourself http://sourceforge.net/projects/sleepyhead/
I am hearing more these days about people getting distilled water on prescription, so worth asking your new GP about this.
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Permalink Reply by suzanne erdbrink on
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Kath Hope said:Hi Suzie, and I remember when we spoke via email before you came back to the UK (and welcome back by the way) that you'd find the system very different, and it's different again in the USA. Unfortunately, many clinics only supply basic fixed pressure CPAP machines and rely on how a person 'feels' rather than viewing the data to check how well we're being treated. People who wish to have more sophisticated machines tend to purchase them direct from the manufacturers. I would hazard a guess to say that around 75% of clinics supply fixed pressure (or auto sometimes only in certain circumstances) and the other 25% do supply APAP or data-capable machines.
Regarding losing weight for a cure, I certainly hope they haven't raised your hopes too high, as there is only a small percentage of people who do get cured from sleep apnoea through weight loss. In fact I wrote an article on this a while ago http://www.sleepapnoeablog.com/obesity-weight-problems/
If you're using one of the newer models of machines, like the Respironics System One RemStar, Resmed S9, Fisher & Paykel Icon or Devilbiss Intellipap Auto (known as Sleep Cube in the UK) then you can use the free Sleepyhead Software to view the data yourself http://sourceforge.net/projects/sleepyhead/
I am hearing more these days about people getting distilled water on prescription, so worth asking your new GP about this.
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suzanne erdbrink said: Thanks Kathy, yes its certainly been an eye opener. I will take a look at the Sleepyhead link thanks for that. At the moment the Seep Centre in Australia are happy for me to send them the data for interpretation every three months which is good of them so i might stick to that for now.I will ask about distilled water on prescription. Thanks
Kath Hope said:Hi Suzie, and I remember when we spoke via email before you came back to the UK (and welcome back by the way) that you'd find the system very different, and it's different again in the USA. Unfortunately, many clinics only supply basic fixed pressure CPAP machines and rely on how a person 'feels' rather than viewing the data to check how well we're being treated. People who wish to have more sophisticated machines tend to purchase them direct from the manufacturers. I would hazard a guess to say that around 75% of clinics supply fixed pressure (or auto sometimes only in certain circumstances) and the other 25% do supply APAP or data-capable machines.
Regarding losing weight for a cure, I certainly hope they haven't raised your hopes too high, as there is only a small percentage of people who do get cured from sleep apnoea through weight loss. In fact I wrote an article on this a while ago http://www.sleepapnoeablog.com/obesity-weight-problems/
If you're using one of the newer models of machines, like the Respironics System One RemStar, Resmed S9, Fisher & Paykel Icon or Devilbiss Intellipap Auto (known as Sleep Cube in the UK) then you can use the free Sleepyhead Software to view the data yourself http://sourceforge.net/projects/sleepyhead/
I am hearing more these days about people getting distilled water on prescription, so worth asking your new GP about this.
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That's certainly a very good service from your previous clinic in Australia Suzanne
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Permalink Reply by Terry Vella on
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Suzanne, sorry, i just read this, I've been flat out at work with cut backs etc, we do seem to do things a bit better.
Below are two Youtube videos on Sleepyhead, in the future if you want to post your sleepyhead data we can also have a look at it, I update and analysis my data every Sunday, good luck.
http://www.youtube.com/watch?v=AuAnzBVWYD4 Link to Sleepyhead Youtube Video part 1
http://www.youtube.com/watch?v=bmhXkmeJDIM Link to Sleepyhead Youtube Video part 2
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Thank you so much. xx
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Re distilled water. I'm sure I bought some in a garage only a couple of years ago. I think it's still used for old car batteries.
Kath Hope said:Hi Suzie, and I remember when we spoke via email before you came back to the UK (and welcome back by the way) that you'd find the system very different, and it's different again in the USA. Unfortunately, many clinics only supply basic fixed pressure CPAP machines and rely on how a person 'feels' rather than viewing the data to check how well we're being treated. People who wish to have more sophisticated machines tend to purchase them direct from the manufacturers. I would hazard a guess to say that around 75% of clinics supply fixed pressure (or auto sometimes only in certain circumstances) and the other 25% do supply APAP or data-capable machines.
Regarding losing weight for a cure, I certainly hope they haven't raised your hopes too high, as there is only a small percentage of people who do get cured from sleep apnoea through weight loss. In fact I wrote an article on this a while ago http://www.sleepapnoeablog.com/obesity-weight-problems/
If you're using one of the newer models of machines, like the Respironics System One RemStar, Resmed S9, Fisher & Paykel Icon or Devilbiss Intellipap Auto (known as Sleep Cube in the UK) then you can use the free Sleepyhead Software to view the data yourself http://sourceforge.net/projects/sleepyhead/
I am hearing more these days about people getting distilled water on prescription, so worth asking your new GP about this.
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The water you've seen in the garage Bernadette is deisonised water, and best not used in our humidifiers. I used to use it years ago when I first went onto CPAP as I thought it was the same thing. Even my GP suggested I keep it for the car battery and iron rather than my lungs
We have a long discussion here about distilled water if you're using a humidifier on this discussion http://hope2sleepguide.co.uk/forum/topics/distilled-water-v-s-tap-w...
Bernadette Plunkett said:
Re distilled water. I'm sure I bought some in a garage only a couple of years ago. I think it's still used for old car batteries.
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Hi,I did read about that difference as well as what Kath found out about the difference between distilled and purified water. In fact, I just checked and the container I have says 'purified water' on it. I can't remember where I bought it though.
I was wondering though, whether the suggestions about getting 25 l on prescription made sense. Wouldn't water get contaminated by sitting around for a long time, even with the container closed most of the time?
Kath Hope said:The water you've seen in the garage Bernadette is deisonised water, and best not used in our humidifiers. I used to use it years ago when I first went onto CPAP as I thought it was the same thing. Even my GP suggested I keep it for the car battery and iron rather than my lungs
We have a long discussion here about distilled water if you're using a humidifier on this discussion http://hope2sleepguide.co.uk/forum/topics/distilled-water-v-s-tap-w...
Bernadette Plunkett said:
Re distilled water. I'm sure I bought some in a garage only a couple of years ago. I think it's still used for old car batteries.
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I buy my distilled water online. Its an expensive way to get it because I have to pay for the postage, but I don't know of anywhere near where I live that sells it. It costs about £8 for 5 litres - of which I buy two at a time plus about £8 in postage. Type 'distilled water online' to find a seller.
Pete
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