"please keep me updated about oximeters "
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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."
Views: 690
Replies to This Discussion
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Permalink Reply by Kristina Zabala on
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??? If you're getting up to go to the restroom, why are you relating that to your CPAP? Stop drinking fluids late in the day, especially caffienated ones.
If I have questions about my machine, I ask at the sleep lab, where I got it. If I have questions about using it, I ask the sleep lab or the doctor who sent me there. The techs at the sleep lab that I go to have the most information, even more than the doc about using the machine.
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Permalink Reply by carole debeer on
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I think the the fact that you are so upset is probably not helping either. I am on my third month with the cpap and am logging in 4-5 hours of cpap sleep (but it hasn't been easy), with usually 1 pit stop., but there are nights that things are worse. I am not a medical professional and I also am not getting much help from professionals, but I have worked out a few things that are helping me.
I try to be more active in the evenings than I was, no coffee after dinner, no liquids late at night. Basically medical issues aside there are some things you need to work out for your self. You seem to be able to fall asleep ok...
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Kristina, nocturia (frequent need to urinate at night) is a very common problem and side effect of OSA.
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I work as a RRT in DME for sleep. The DME company should be downloading your data card, but it is a doctor's responsibility to interpet what it it says. It also depends on the relationship between the therapist at your DME company's relationship with your sleep doctor. I have an excellent relationship with the sleep doctor here in town and I can help to interpret the data, but the results should come from a physician. I would continue to push!
Jennifer
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Permalink Reply by wallace j smith jr on
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yeah judy give it too em
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.
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it does take some time to get used to the machine and the advice you've gotten about slowing down/quitting caffeinated beverages is true as well, take judys advice and mollets they want to help you,,this disease has support now so use the people that wanna help you cuz we all know proper sleep is darned precious and you will get their but perseverance is necessary!!
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Ok, I am going to look at this a differnt way then anyone else. Going to the bathroom every hour may, and I said may be caused by high blood suger. High and low blood suger is very common with people who have sleep apena.
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Permalink Reply by Mike on
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Excellent point. Some patients private message me rather than posting to the open forum, thinking (incorrectly) that I have all the answers -- it could also be that they're not comfortable putting themselves "out there" -- I'm not sure which most of the time. So what I have done is copied the substance of the message, and omitted the identity of the patient (in case the person wanted anonymity) and PM'd back the patient with encouragement to follow the thread and post back to it directly so that i can get out of the middle.
Banyon said: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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You bring up a very good point that none of us have asked about, Edwin. Has this patient had a good physical checkup by their family doctor to rule out other causes of his/her nocturia??
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Permalink Reply by Dan Lyons on
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I would also file complaints with the Attorney General's office of the state to which you reside and with the Insurance Commissioner's office for your state.
You would be surprised how fast these "professionals" want to stop an investigation into their business and professional practices.
Investigations into their practices by a governmental agency are public records and can be viewed and used against them in future complaints and reviews.
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Mary, Andy posted the CPAP parts replacement schedule
Mary Zimlich said: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
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Permalink Reply by susan mccord on
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Totally true. Even though I know the urination factor is present with OSA, I ALSO know, from family experience, that diabetes causes the very same thing. Has your MD done a fasting blood sugar on you? If not I'd encourage you to ask him/her for one. It can't hurt to rule ALL possibilites out, and IF you have a blood sugar issue, it needs to be diagnosed and treated. If you get tested and don't, we'll all celebrate with you!! Having one thing doesn't preclude having something else. I've been a heart patient for four years and had apnea, undiagnosed all this time. Actually since the early 70's......check out all possibilities. It will serve you well and if testing turns out fine, you can at least have peace of mind about SOMETHING........
Stick with SleepGuide--as you now know there are a lot of very knowledgeable, kind people on this site.
Susan McCord :-)
Edwin Kiessling said:Ok, I am going to look at this a differnt way then anyone else. Going to the bathroom every hour may, and I said may be caused by high blood suger. High and low blood suger is very common with people who have sleep apena.
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