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DME, Broken Vpap, Doctors and Medicare
#1
DME, Broken Vpap, Doctors and Medicare
Hi all, long post ahead. First off, been using pap nightly since 2005. I have OSA and occasional central. I started out with over 140 events during study and also dx with RLS, PLMD and a neuromuscular disease. Weak exhale ability. 
I’ve learned so much from this forum but am forced to ask for help. 
I was admitted to hospital last December with total renal failure. I was confused and totally disoriented besides being a fall risk as I use a wheelchair. 3 days later I suddenly had a 10mm subdural hematoma which had to have happened by a fall there as my admission ct was normal. I don’t remember anything from December 19 until the 22nd when I briefly awoke to see the date on the wall board. Then unconscious until the 30th. In between was hell. I had an emergency craniotomy on the 23rd, had an allergic reaction to my 2nd series of blood transfusions which caused seizures and high fever on the 27th And vented for 3 days. Couldn’t speak, wasn’t oriented etc. Had serious aphasia so communicating was awful. Finally out of icu into step down unit where they broke my S9 Vpap S Auto. I told them as best I could that it was broken. They refuse to take responsibility. I am not eligible for a new machine until next April. I’ve been recuperating and rehabbing since then. I’m using an S8 that I had bought used as a spare. Thank goodness!
My problem is that no one will follow Medicare’s rules. I needed a new script stating “broken beyond repair and not financially efficient to repair before 5 years are up”. Did that. They picked up my machine on Nov 19th. I’ve been calling dme almost daily and no one calls back. Trying to find out what the repair states. No one will tell me. Suddenly the dme truck showed up yesterday without warning and I almost missed him. He hands me a resmed bag says sign here and is walking away before I can catch him. I needed answers. I open the bag and it’s an S9 Vpap COPD. I don’t have COPD and it’s not an auto. And it won’t let me exhale at my pace before shoving more air into my nose. I turned it off and repacked it. Called said dme and explained this to the one person who finally called me back. Insisted that “this is the machine your doctor ordered” I said oh heck no to that as I was there when he wrote the script for a bilevel Auto with humidification and preference then was S10 Aircurve S. Your pinned post on what to do before accepting your machine is right on!  She said that she knew better. I told her I didn’t need a $6700 outdated ventilator that didn’t do what it I needed. She would not tell me if the machine which was mine at no cost was because of it being a loaner or what Medicare would pay for as my next machine. Told me to ask Medicare....oy. I took it to my sleep lab rt who has been trying to help me since January. He took one look and freaked out. Took a picture for ammunition and will get back to me. The dme told me many times that I could not have a loaner but could “rent” one. My RT says that’s illegal. He says that they dumped old stock on me to shut me up. 

I’ve got residual brain damage and memory issues but I write everything down because of that. 

I downloaded the clinical guide for the copd machine and it states not to use with recent craniotomy. No one told us that. I’ve been on Vpap as best as possible as my head healed but now wonder if more damage was done. My sleep doc (3rd since moving to west central Florida 4 years ago) is awful. The dme’s notorious at the sleep lab. My doc says an ahi of under 10 is great! I’m at 5.5 so slightly above the normal ahi limit of 5 but used to be at less than 1. So no help from him. 
I would appreciate any direction towards a healthy and helpful way to sleep well. 
Thanks in advance. Sorry if this was too much information but I’m so frustrated. I sleep 9-10 hours a night and am exhausted when I wake up. 
Frustrated in Florida
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#2
RE: DME, Broken Vpap, Doctors and Medicare
Welcome to the forum, and sorry you've been through the ringer. Your Resmed VPAP-S is replaced by the Resmed Aircurve 10 S. Both are FIXED pressure bilevel machines with a IPAP and EPAP pressure, and both use the Easybreathe technology to provide more comfortable breathing. An upgrade that should be available under insurance at the same cost is the Resmed Aircurve 10 Vauto, which has automatic adjusting pressure. None of these machines are intended for central apnea or for people that need a backup rate. The VPAP COPD machine has fixed pressure like your VPAP-S but is capable of IPAP pressure up to 30 cm. It should be able to be set for IPAP 15 and EPAP 11 with the backup rate off. It does not have Easybreathe which is a more comfortable shaping of the flow rate changes. In addition to IPAP and EPAP, the machine has settings for inspiration minimum/maximum time, trigger and cycle sensitivity and other settings.

The real solution is to get a new replacement machine, and that should be covered, since your machine is not functional and will clearly cost more to repair than the additional service life. I would encourage you to ask your doctor to request the Resmed Aircurve 10 Vauto instead of the S. It can be setup in VPAP S mode, but has more features to adapt to your changing needs. Meanwhile, I think we can review your VPAP COPD settings and get you fixed up to be reasonably comfortable. Please reply with the settings for:
Mode
IPAP
EPAP
Ti Max
Ti Min
Trigger Sensitivity
Cycle Sensitivity
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: DME, Broken Vpap, Doctors and Medicare
I’m Hi, new at replying and quoting so I will keep it simple. First, I understand all that about the COPD machine and could make it work but it’s not an improvement over my S8 (even with its old age hiccups). I will stick with that one for now. 
I believe that when I showed the S9 copd to the clinic rt, he took a picture and plans on taking care of this squeaky wheel. He was going directly to both the doctor and the dme facilitator that services them this afternoon. He was furious. 

I can’t show you my S8 results as the card receiver is broken and can’t accept the odd card that the S8 uses. 

I’m hoping to hear early tomorrow that I will be exchanging the S9 for the Aircurve model you mentioned. I had forgotten we’d chosen that one in our last meeting. I need the auto function. 

I’m wondering if I should be concerned about a sleep pulmonologist who thinks “around10” is a good result?? 

Thanks all. I just keep trucking but it’s having it’s moments. 
Thanks
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#4
RE: DME, Broken Vpap, Doctors and Medicare
"around 10" sucks and his acceptance of mediocrity in spite of easy to achieve better results is a fireable offense. I would not trust him with any of my health care if that is the standard he sets. That is like your mechanic telling you 2/32 tire wear is safe because he can still see tread instead of just mounting your new tires.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: DME, Broken Vpap, Doctors and Medicare
I was trying to keep my sarcasm down about the doctor. I am desperately looking for real and accessible sleep doctors. I knew I was in trouble when I tried their sleep lab. Hasn’t ever been upgraded. 25 year old beds, no attached bathrooms and looked like a set from a horror movie. I left that lab to a marginally better one in an office complex. All extremely outdated from my last study in 2014. 

There just are lousy doctors and facilities around here. I’m obviously going to have to go to a bigger city or teaching hospital at least 2 hours each way.  I will finish my dealings with these folks to my satisfaction and find new, acceptable, knowledgeable and caring doctors who care that I get the best treatment possible. 

Thanks for backing up what I’ve been telling my spouse, the doctors suck and we need to go elsewhere. Your comment got through to him. 
This apnea board has been the best help over the years and I thank you all.
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#6
RE: DME, Broken Vpap, Doctors and Medicare
The sarcasm can get pretty deep around here, especially the Ducks.  Yoou will know them by the sound they make ;-)
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: DME, Broken Vpap, Doctors and Medicare
If you're in an area that's small-town or rural, then this is probably no help, but the American Sleep Apnea Association, whose web site is sleepapnea.org (not to be confused with sleepapnea.com, which is Philips Respironics), says that it has a lot of local support groups around the USA.  The support group in general is called A.W.A.K.E., and there's a web app here for searching:

https://www.sleepapnea.org/community/all...twork-map/

Quote:A.W.A.K.E. Network

We at the American Sleep Apnea Association know that the road to successful treatment of sleep apnea comes sooner and more smoothly if you can benefit from the experience of those who came before you.  In addition to our web site and other resources, publications, and videos, we provide patient support in several forms.

We have A.W.A.K.E. education and support groups all over the country. New ones are starting up all the time.

I know nothing further about it and I'm not a member of ASAA or a local group, so this is only sort of a random idea.  The org also operates CPAP Assistance Program: "Since 2010, providing CPAP equipment for patients who cannot afford their life saving treatment. ... The ASAA is a patient-led nonprofit 501c(3) formed in 1990 to fight for people with sleep apnea. The ASAA’s CPAP Assistance Program (CAP) has provided over 5,000 CPAP equipment packages to patients in need over the last three years. It is our mission to help as many patients as possible get the treatment that they need. No one should go untreated due to financial hardship or other issues."

Quote:ASAA office:
Phone: 888-293-3650
Fax: 888-293-3650
E-mail: asaa@sleepapnea.org
American Sleep Apnea Association
641 S Street NW, 3rd Floor
Washington, DC  20001-5196
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#8
RE: DME, Broken Vpap, Doctors and Medicare
Thanks, will call them. Not sure if I’m allowed to ask for suggestions on good sleep doctors and modern labs but if I can, help in the Tampa or Orlando area would be useful. I’d travel further but would rather not, if possible.
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#9
RE: DME, Broken Vpap, Doctors and Medicare
If you are open to good options, please consider the Resmed Aircurve 10 Vauto advertised in the Orlando Craigslist for $300 and located in Oscala. This will give you everything you want, and will make a great backup once your Medicare machine finally comes through. You know a machine can fail and having a backup at this cost is a great investment.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
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Organize your OSCAR Charts
How To Attach Images And Files to your posts
How To Deal With Equipment Supplier
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: DME, Broken Vpap, Doctors and Medicare
Thanks! I’ve been watching the Tampa cl where someone has been trying to get rid of a supposedly new Aircurve asv for $800. It’s been dropping from $1200 several months ago.
Forgot to check Orlando as the construction traffic to get there is horrible.
Thanks for the heads up!
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