"please keep me updated about oximeters "
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Getting the Runaround: Dan's Story
Pronunciation: \ˈrə-nə-raund\
: to act in a way which makes it difficult for someone to do something, for example by refusing to tell them things they need to know.
My friend Dan knows he has obstructive sleep apnea and is trying to use CPAP properly to treat his condition before it treats him to (i) at worst, an untimely death, or (ii) at best, a diminished quality of life. Amazingly, that puts Dan in about the 95th percentile of all people who have Sleep Apnea --- Dan is a superstar of Sleep Apnea simply because he knows he has it, and is continuing to seek treatment. What's more, Dan has friends and family who share the disorder and check up and encourage him on his progress; he has a highly skilled doctor in New York City, where he lives, well trained in Sleep medicine; he has one of the best CPAP machines on the market, the ResMed S8II; and he has a DME that monitors his compliance with the most cutting edge technology there is -- the ResMed ResTraxx monitor, which beams his compliance data to his DME on a daily basis so the DME can alert Dan to any problems, and make adjustments to his therapy. With all these things going for him, Dan is sure to get the care he deserves, right? Wrong.
Dan has been feeling very tired lately, so he left a voice mail for his DME last week to ask whether what they were seeing with his data was normal. No response. Dan is a persistent guy, though, so he called back this week and left another message, this time leaving his fax number and a request for a fax copy of his compliance data so that he could try to interpret it himself. Days go by . . . yesterday, though, he received the fax copy of his report with a cover page note: "looks like you are doing well." Confused because he feels so crappy, Dan poured through the report to see how he could possibly be doing well. At first glance, the report did look good -- the summary page didn't flag any sessions as particularly alarming. It was only when he went to the detail page did he realize that things were as bad as he had thought --- AHIs in the teens and the 20s, the mask coming on and off throughout the night.
How could it be that he got the "all clear" from the DME with such terrible results? Turns out, the DME sets up its monitoring of the data so that as long as the machine is being used for 4 hours or more a night, no red flags are raised. Well, Dan was using the machine more than 4 hours most nights. Problem was that during those 4 hours, he was slowly choking to death. This is the reason he went on CPAP in the first place!
Even though Dan is slowly suffocating himself with the DME's blessing, the DME is rewarded by Dan's insurance company, which, before it cuts a check to the DME, checks only that Dan is still using the machine. I suspect that's why in this case, Dan has gotten the runaround.
Views: 1328
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Comment by Mary Z on October 15, 2010 at 3:41pm
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Man, what a run around. Having trouble getting my numbers into normal ranges I can empathize. The only thing I can suggest is to get a copy of the software and to start checking your data yourself. If you have an auto machine you can slowly and cautiously tinker with the numbers and see if you can get better results . I personally have just changed doctors after a ridiculous script for 30/25 and a servo vent machine without taking advantage of the machines timed breath capabilities. I also have scheduled and ENT appointment to check for possible naso pharynx problems (deviated septum, enlarged turbinates) or large tonsils. I do not want the more aggressive and irreversable palalte, uvula, and tongue surgeries, but I thought the consult might catch some relatively small problems that if fixed could improve my numbers. We are also getting good reports about the Oral Systemic Balance Device from several forum members. Perhaps an oral device in addition to CPAP. The number to ask Dr. Robson about qualified dentist in your area is 1-800-977-1945 (thank you Dr. Lawler). I can't imagine the frustration you must be feeling with no one being willing to stick with you and help you.
Good luck, Fred, keep us posted.
Mary Z.
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Comment by Fred J. Stellabotte on October 15, 2010 at 8:47am
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Folks,
My story is very similar to Dan's except I am getting the run around by the Doctors. For the past 2 years my AHI has never been lower then 20, it is currently in the 30's . I have been to 4 doctors .. over that time, have had 5 sleep studies and 3 different BiPap machines. I am using my machine for over 9 hours a night, with very little leaks.
Some of the doctors say I have simple OSA, others say I have CSA, Periodic breathing and various other diagnoses. The doctor's get tried of working with after awhile, and make it hard for me to make an appointment.
I have been fighting this condition for 10 years, I am not sure what to do next. I am frightened.
Thanks ..
-Fred
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Comment by 99 on September 20, 2010 at 11:39am
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repironics now say that the light does not work without the humidifer attached
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Dear Mr Williams,
Further to our conversation earlier, I can confirm that it is possible to set a backlight on the Cpap device without attaching a humidifier. Instructions on how to do this will be in your options manual.
If you need any other information then please feel free to send me an e-mail or give me a call and I’ll see what I can do.
Hope this helps.
Best regards
Adam Dummer
Customer Relations Assistant
Respironics UK
Philips Home Healthcare Solutions
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Chichester Business Park
City Fields Way, Tangmere, Chichester, PO22 2FT
Tel: +44 (0) 800 130 0845
Fax: +44 (0) 800 130 0846
WebSite: http://www.philips.com/respironics
E-Mail: adam.dummer@philips.com
*****************************************************
Philips Electronics UK Ltd. Registered in England No. 446897
Registered Office: Philips Centre, Guildford Business Park, Guildford, Surrey, GU2 8XH
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now say that the back light is not functional without the humidifier and for it to work you need to attach an humidifer
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getting the run around
Dear Mr Williams
We have already explained to you that there is no back light on the System One machines. This is the way Philips Respironics designed it.
--
Regards,
Linda O'Rourke
Customer Care Team
Intus Healthcare Ltd.
Therapeutic Options
for Proactive People.
so posted email from philips respironics back
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authoritative answer from Philips Respironics System one auto flex
i does have a back light
Dear Sir,
I can confirm REMStar Auto System One does have backlight with it.
Kind Regards
Drew Hodd
Customer Relations
Respironics UK
Philips Home Healthcare Solutions
Chichester Business Park, City Fields Way, Chichester, Tangmere, West Sussex, PO20 2FT
T: +44 (0) 800 1300 845
M: +44 (0) 800 1300 846
E: Andrew.Hodd@philips.com
Philips Electronics UK Ltd. Registered in England No. 446897
Registered Office: Philips Centre, Guildford Business Park, Guildford, Surrey, GU2 8XH
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i have just purchase prsystem 1 auto from intus health care
and complained that there were no back light
they told my that that feature was discontinued, which i temporaraly accepted. but on thinking about it i emailed resperonics and am waiting for an authoruive reply
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Comment by Judy on August 8, 2009 at 12:58pm
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Steve, my first local DME supplier's RRT was either not at all knowledgeable about her job - or less than truthful. I had the hard plastic swivel on a CL2 break and the small simple nasal cushion punctured after I had had the CL2 for 3-4 months. When I went in and asked for a replacement swivel and cushion I was first told they didn't have any, that I would have to buy an entire new mask (and headgear) out of pocket since I hadn't had the CL2 for 6 months. I actually had to go home, access the replacment schedule and HCPCS code for the parts to shove under her nose. It took 3 weeks for her to order it in. A third visit their EMT was able to "find" a swivel in the "miscellaenous" stash. When my sleep doctor scripted a 3 week loaner APAP I was provided w/a different brand than my CPAP but because he hadn't specifically included a heated humidifier w/the loaner their RRT told me that one was NOT available. When told even if my sleep doctor wrote another script including a loaner humidifier one was NOT available. My sleep lab was able to come up w/a stand alone passover humidifier but even that didn't help. THANKFULLY, a friend had a stand alone F&P HC 100 stand alone heated humidifier he gave me or that loaner APAP would have been a complete waste as after the third night w/o humidification the interior of my nose was chapped to the raw meat stage. When I needed a nebulizer this same RRT told me that Medicare would NOT pay for one for me. Yet another local DME supplier provided me w/a Medicare paid nebulizer. I was lied to about the data capabilities of the Resmed S8 Elite w/EPR my sleep doctor had scripted for me by this same first supplier's RRT. There's more - but you get the drift. I'm happy w/my second local DME supplier so mine is not sour grapes against all local DME suppliers nor do they have to do w/a lack of education, support and advice from that first supplier..
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BTW, take what is written here, especially negative experiences, with a grain of salt. We have had recorded conversations (for quality assurance) debunk negative "reports" to the Dr office about how horrible the RT was while helping them on the phone... Usually, the DME provider is patient and can help a patient with a multitude of pressure therapy problems. If the problem is NOT related to the performance of the equipment/supplies (and I'll leave you to figure out then where the real problem is) then there's not a lot we can do but be polite and reassuring. If that's not good enough, well, they might get on here and "complain". So, get out the salt shaker when reading some of these "reports"!
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