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Steven B. Ronsen updated their profile
Sep 15, 2018

I am newly diasgnosed (young-ish female) with moderate OSP (index of 27) and use a Philips Respironics System One CPAP. My doctor wants me to try increasing the pressure from 5cm H2O up to 6 for two weeks, then up to 7 for two weeks and finally to 8 for two weeks. Hopefully one of the pressures will provide me with effective sleep (still waiting for that one), but I probably can't go too high because central apneas showed up on my sleep study at 9 and 10 cm H2O.

So the question is why can't I find a way to quickly get the pressure changed? I'm fortunate to live in a major metro area with plenty of DME suppliers, doctors and so on, but it takes repeated calls to chase up prescriptions, pin down an appointment that fits around looking after a toddler and doing the school run for an older child. I am not going to set the pressure to 18 and blow myself up... does anyone know of a way I can gain more control of my own life - just by being able to adjust the pressure without being nannied by the DME 'respiratory therapist'? These added hurdles are literally increasing my wait for a good night's sleep by weeks. Am I just impatient? I'd willingly pay for a CPAP machine if I can control it myself, as per the doc's Rx. Is this a possibility?

Sorry to rant, but I am a motivated and compliant patient: working through the emotional issues of recognizing the years of lost sleep and dealing with the reality of needing the CPAP and mask, (probably for the remainder of my life) are challenges enough without getting the run around from the doctors' office and the DME supplier.

Any ideas would be very welcome.

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Elizabeth, what a mess, I understand your frustration. First of all can your doc write the prescription just the way you told us? And if you're waiting at home for a service call, maybe the appointments could then be made in advance or, if it's not too much trouble with a toddler and older child in the mix, maybe you could make an appointment to take it by there when a tech would be available.

There's another idea, but I don't know if your machine is data capable or not. Do you have a smart card that the techs read for data? Sometimes these can be programmed to make the machine changes. That way with the script from your doc you can mail the smart card back and forth with each change on it. Is you doctors office able to make the changes, mine has his own techs and makes all changes while I am there.
I don't know the "secret handshake" for your machine, but maybe someone can write you personally and tell you how to make the changes. You can also ask for the same info on cpaptalk.com. Hopefully someone here has already given you that info. We usually like to do it off the forum as too much information can lead some people into trouble, but you seem to have a genuine need and the sense not to misuse the info. Be prepared to give very spcific info about the model of your cpap.
Good Luck,
Mary Z.
Thanks for the encouragement, Mary. My machine is data capable. I'll try cpaptalk.com; I've not been there yet so thanks for the guidance.
Thank you so very much - this works, and I had a good conversation with my DME supplier this morning. Decent sleep is on the horizon.
These are the kind of post that will make the pros unavailable to this site. Please post these privately, or not at all.

j n k said:
Here's the sort of info you can get there, i.e. the secret handshake. :-)

http://www.cpaptalk.com/viewtopic.php?f=1&t=49156&p=449887#...

Elizabeth said:
Thanks for the encouragement, Mary. My machine is data capable. I'll try cpaptalk.com; I've not been there yet so thanks for the guidance.
Ah, Elizabeth, GOOD ON YOU!!! for having a good conversation w/your DME provider today. I'm glad that you were willing to at least try working thru them. MaryZ made an excellent suggestion about being able to maybe exchange data cards w/your DME provider or doctor via the mail. That would be a very good way to go, especially since you are new to PAP therapy. If things don't work out there is always the option of HAVING to take your therapy into your own hands after you have educated yourself well.

Iif you do go the mailing the data cards route you might want to SPECIFICALLY ask them to NOT erase the data from one download to the next. This would mean TWO data cards specifically designated for your specific PAP. W/the EncorePro software they use for the Respironics PAPs it is easy to do by using the PAP's serial number as the patient ID code.

Good luck!

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