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Stefan updated their profile
Sep 16
Profile IconBLev and bruce david joined SleepGuide
Aug 21

Caught Between DME, Doctor and Sleep Lab and Nobody Stepping Up

from a frustrated new user -- any advice would be greatly appreciated: "I had my doctor's appointment today and although I thought I would get things straightened out, I am now much more confused and frustrated than ever. I don't want to burden you any more but I really do need advice. To remind you, I have been having trouble sleeping, getting up every hour or so to use the restroom. This has been going on for 2 week (and before that about 4 weeks of getting up every 2 hours to use the restroom). My DME has been reluctant to do anything to help me after changing my mask twice and getting past the first 30 days of my having the cpap machine in possession. At my doctor's visit today, I found out that my doctor does not want to take any more responsibility for my problems with using the cpap machine, as she referred me back to the DME or the sleep clinic. It seems that the doctor, the DME and the sleep clinic are giving me the impression that they have done their parts in regards to getting me on the cpap machine. For example, none wants to read the data card in the machine to see what going on with my sleep problems. The doctor says the DME is suppose to read it. The DME says the doctor is suppose to read it. The sleep clinic says the DME is suppose to read it. My insurance company has customer service agents who don't understand the problem, at all, and make it difficult for me to get past them to someone who does. (I don't have the software or know how to read it.) Meanwhile, I am not getting much sleep and I am feeling worse that before I started cpap therapy. I know that I could die if I stop using the machine and I just feel so bad about no sleep well and about being in this situation where none of the three I am having problems with care about my health enough to do more to help me. They have made their money off my sleep apnea and its just not practical for them to invest any more time in me, I guess. YET, they have control of my cpap machine/supplies. Is this what the forum participants mean when they refer to being on your own and having to take charge of your own therapy? This is such a mess! It seems that people either do well adjusting to cpap therapy (eventually), or, people have problems with it and have to work their problems out themselves, I guess. I don't know what I expect from you but any advice or encouragement is very, very much appreciated, right now. This is such a nightmare! I understand now how ex-pro football player Reggie White might have died (because he was not using his cpap machine). He probably had similar problems and frustrations and just decided to take his chances."

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when you deal with people or you need to latch onto names and only deal with that name unless it is escalated higher then you latch onto that name you need to do the same from the three that are giving you the runaround, is there a professinal body that you can complain to, complain, are there any other bodies to complain to, complain, and so on, again get the names

they are giving you the SODA (SOD OFF DONT ASK) treatment, keep on asking
I say you give mollette the number. I am betting she fixes it.
The Physician refers to the sleep lab. The sleep lab performs the sleep study sends results to Physician. The Physician then refers to local DME. DME then does the set up and reads the card for compliance and reports any changes to the Physician. In turn the Physician will inform the DME to make changes or will set up a retitration. The DME is to read the card for you. Usually the Physician and Sleep labs do not have the capability to read the card. This is why there is a 3rd party such as a DME.
Here I would say the Physician and DME are not communicating and this spells trouble. Demand the DME and Physician meet with you regarding this matter.
I think all these suggestions are true and helpful (including giving Mollete the #s--I truly believe she will try to assist you).

Another thought I have is to ask your sleep doc which DME HE prefers to work with. Mine doesn't know my DME personally but he knows him by reputation and doesn't hesitate to call him and vice versa.

You can also go over that DME's head and contact a supervisor or even go to the big guns in the DME company. They don't like their reps giving lousy care and will intervene. If not, find another DME!!!! You also have the option to find a new sleep doc if you don't feel that he/she is giving good care.

And please stay on SleepGuide. Here you WILL find the support you need as you work at trying to climb through this process. It's hard to hear that you have need to facilitate your own treatment, but it's true and you can do it with SG backing you up. We're all here for you so don't be a stranger!! Good luck--you can do it!!!

Susan McCord :-)
Mike, I would try to find a new Doctor. Mine (my second who takes me very seriously, not like my first one) works with a DME to provide complementary service. They know how he likes things. The Doc has his own techs that read the machine data when I see him- every six weeks while we're titrating. The DME suggests a month of data on my ResScan card and I mail it in, he reads it and sends me back the data.
There are good folks out there. Thanks goodness I found some. Someone posted an item listing how often components should/could be changed (insurance coverage schedule)- this was a big help for me- if you're reading this (whoever posted the schedule) would you post it again please?. It helped me to know I could change my mask cushion every month and the mask every three months. When I spoke to the DME and was knowledgeable about the schedule I could say - it's been three months and I need a new mask, or it's been one month and I need a new cushion. My DME is a great guy who came out last night to fit me with a new mask. Of course his fitting was just a starting point for adjustments as we could not reproduce my way of sleeping sitting in a chair. Still he hooked the machine up to the mask, eliminated leaks and made sure of the fit and that I knew how to adjust it. You should be getting service from a Doc and DME who step up to help you and understand that compliance is your responsibility, but the machine titration and fitting of the mask and reading the data is their responsibility. I'm not as hands on as some of the participants here, but I did learn from them how to read each days data (ResMed Auto VPAP 25) and found that helped explain why some days I don't want to get out of the bed and am still sleepy during the day.
You have to be dedicated to use CPAP, but it shouldn't be a nightmare to navigate the system or deal with unhelpful, irresponsible people.
Please keep us posted, hang in there and good luck,
Mary Zimlich
Sounds like the doctor that you're referring to may not be a sleep specialist. If not, it would be greatly beneficial to have a sleep specialist start walking you through your CPAP process. Primary Care Physicians are great at what they do, but sleep medicine is not something that they do.

Depending on your insurance, or your ability to pay out of pocket, you may want to start shopping around for a different DME. There is a really crappy DME in my area that gets 95% of the business because of all the HMOs. (the name rhymes with SmApria) They suck like a vacuum cleaner with a new filter. There are 3 other small private DMEs that are great. Problem is that doctors and patients don't know about them. Sleep labs do. Ask your sleep lab if they have any recommendations for a DME with better follow through.

It's pretty standard for the DME to be the one to read your card, but any sleep specialist that gives a flying S* about your treatment will want to track your progress too, they just don't usually have the software to read it, though that is starting to change.

Since you're giving Mollete a bunch of phone numbers, would you give me your Social Security Number. ;^)

saz
Your sleep doctor is an incompetent ass! If she doesn't know how to interpret and understand downloaded data from your CPAP how in the devil was she able to interpret and understand the data from your sleep study and titration study? She is totally shirking her RESPONSIBILITIES AS A DOCTOR. Whether you have a fully data capable CPAP or just a bare bone compliance data CPAP makes no difference: she is totally shirking her RESPONSIBILITIES AS A DOCTOR!

1] What brand and model CPAP are you using? THAT will help us a LOT. It is quite likely that the CPAP you've been given is not capable of providing any data but compliance (usage) data and compliance data is of ABSOLUTELY NO VALUE TO YOU or your doctor. Its ONLY value is to provide proof you are using your CPAP enough to allow your DME supplier to be paid by your insurance.

2] Lets tackle one problem at a time. What are you finding is your greatest problem in getting to sleep. Or in staying asleep. Are you having problems w/your mask? Which mask are you using? Are you having problems breathing w/your mask and CPAP on? Does it feel that there is too much air blowing? Or not enough air to breathe comfortably? Mask or machine too noisy?

I can be a vindicative ole broad when medical professionals provide such shoddy treatment as you are receiving.

I would strongly suggest that you
1] send a WRITTEN REQUEST via CERTIFIED MAIL, RETURN RECEIPT REQUESTED to the sleep lab for a copy of
a] the doctor's dictated results from your in-lab sleep evaluation PSG (1-2 pages)
b] the full scored data summary report w/condensed graphs (also called the full disclosure report) (5+ pages) from your in-lab sleep evaluation PSG
c] the doctor's dictated results from your in-lab CPAP titration PSG (1-2 pages)
d] the full scored data summary report w/condensed graphs (also called the full disclosure report) (5+ pages) from your in-lab CPAP titration PSG
d] your equipment order (prescription)

Keep a copy of your written request, the proof of Certified Mail and the green Return Receipt card when the post office returns it to you.

2] Call your insurance company, ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than just this one.

3] Visit the local DME CPAP suppliers your insurance in contracted with. Don't be bashful, explain the problems you've had w/getting information, support and advice from your sleep doctor, sleep lab and current local DME provider. Hopefully you will find one willing to help you out and explain things to you.

4] Send a WRITTEN explanation and complaint of how shoddy your care has been to this point by your sleep doctor, sleep lab and local DME provider (and provide NAMES and addresses) to the American Academy of Sleep Medicine
Accreditation: accreditation@aasmnet.org - General Inquiries: inquiries@aasmnet.org - Mailing Address: One Westbrook Corporate Center, Ste. 920, Westchester, IL 60154 - Telephone (708) 492-0930 - Fax: (708) 492-0943

5] Check your state government's website and find the contact information for the state business licensing body and send a copy of your complaint, providing names and address, to that licensing body.

6] Talk to your family doctor. Ask for his or her assistance. Have you had a good physical regarding the nocturia as well as just general health?

Let Mollete help you. Give her the information she has requested.
BOY, I'm glad you're back, Judy!!!!!!!!! You are flamin' brilliant with this kind of stuff...........!!!

McCord :-)

Judy said:
Your sleep doctor is an incompetent ass! If she doesn't know how to interpret and understand downloaded data from your CPAP how in the devil was she able to interpret and understand the data from your sleep study and titration study? She is totally shirking her RESPONSIBILITIES AS A DOCTOR. Whether you have a fully data capable CPAP or just a bare bone compliance data CPAP makes no difference: she is totally shirking her RESPONSIBILITIES AS A DOCTOR!

1] What brand and model CPAP are you using? THAT will help us a LOT. It is quite likely that the CPAP you've been given is not capable of providing any data but compliance (usage) data and compliance data is of ABSOLUTELY NO VALUE TO YOU or your doctor. Its ONLY value is to provide proof you are using your CPAP enough to allow your DME supplier to be paid by your insurance.

2] Lets tackle one problem at a time. What are you finding is your greatest problem in getting to sleep. Or in staying asleep. Are you having problems w/your mask? Which mask are you using? Are you having problems breathing w/your mask and CPAP on? Does it feel that there is too much air blowing? Or not enough air to breathe comfortably? Mask or machine too noisy?

I can be a vindicative ole broad when medical professionals provide such shoddy treatment as you are receiving.

I would strongly suggest that you
1] send a WRITTEN REQUEST via CERTIFIED MAIL, RETURN RECEIPT REQUESTED to the sleep lab for a copy of
a] the doctor's dictated results from your in-lab sleep evaluation PSG (1-2 pages)
b] the full scored data summary report w/condensed graphs (also called the full disclosure report) (5+ pages) from your in-lab sleep evaluation PSG
c] the doctor's dictated results from your in-lab CPAP titration PSG (1-2 pages)
d] the full scored data summary report w/condensed graphs (also called the full disclosure report) (5+ pages) from your in-lab CPAP titration PSG
d] your equipment order (prescription)

Keep a copy of your written request, the proof of Certified Mail and the green Return Receipt card when the post office returns it to you.

2] Call your insurance company, ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than just this one.

3] Visit the local DME CPAP suppliers your insurance in contracted with. Don't be bashful, explain the problems you've had w/getting information, support and advice from your sleep doctor, sleep lab and current local DME provider. Hopefully you will find one willing to help you out and explain things to you.

4] Send a WRITTEN explanation and complaint of how shoddy your care has been to this point by your sleep doctor, sleep lab and local DME provider (and provide NAMES and addresses) to the American Academy of Sleep Medicine
Accreditation: accreditation@aasmnet.org - General Inquiries: inquiries@aasmnet.org - Mailing Address: One Westbrook Corporate Center, Ste. 920, Westchester, IL 60154 - Telephone (708) 492-0930 - Fax: (708) 492-0943

5] Check your state government's website and find the contact information for the state business licensing body and send a copy of your complaint, providing names and address, to that licensing body.

6] Talk to your family doctor. Ask for his or her assistance. Have you had a good physical regarding the nocturia as well as just general health?

Let Mollete help you. Give her the information she has requested.
Very impressive reply, i only have 3 things to add. Keep copies of ALL PAPERWORK from doctor, DME, and insurance. and at the bottom of your corespondence, put 'CC MY ATTNY and state MEDICAL BOARD'. this will really get their attention. On a separate note, you might want to get a prostate exam... getting up to pee is sometimes related to an enlarged prostate or prostate cancer [don't get upset, just a possibilty], or something else is mucking up your plumbing. FIND OUT FOR SURE, as this may be unrelated to your sleep apnea.
THAT'S good advice, Dave. Better safe than sorry.......

dave foster said:
Very impressive reply, i only have 3 things to add. Keep copies of ALL PAPERWORK from doctor, DME, and insurance. and at the bottom of your corespondence, put 'CC MY ATTNY and state MEDICAL BOARD'. this will really get their attention. On a separate note, you might want to get a prostate exam... getting up to pee is sometimes related to an enlarged prostate or prostate cancer [don't get upset, just a possibilty], or something else is mucking up your plumbing. FIND OUT FOR SURE, as this may be unrelated to your sleep apnea.
Okay I am probably beating a dead horse but from a sleep lab point of view I am not able to touch the machine and in many labs they do not even have a card reader. The DME is supposed to download the card because they have the reader and technically they are responsible for any changes to the machine. That being said.

Do you have a sleep specialists. Not just your primary care doctor but a person who read the study and who specializes in sleep. There may be issues such as periodic limb movements, teeth grinding or other health issues that may be waking you up. There may be some other reason you need to go to the rest room every hour.

You rdoctor may not know what to do. The DME company may be saying they will loose money on your ( I have no idea
You are getting some very bad advice from people who would like to hang professionals like you have encountered (I prefer guillotine ). This is not about legalities and threats. It is about your health. You want a good outcome for your health. Crusading against the professions or the doctor or the DME is not something you need to take on. Plus, you are unlikely to be in good enough physical and mental health at this point to go to battle. Even if you get these people at the point of a gun, it sounds like they are too incompetent to help you anyway.

Do you have a good family doctor you could see? Many of them are starting to become educated in sleep apnea and CPAP. Or they could refer you to someone who is good.

Mike, It seems strange that you posted this and not the patient. What's going on? Can we get some more details about machine, mask, settings?

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