Does your doctor/DME know you're reading data?

Well I don't know about my sleep doctor, I have never met him. But my GP Doctor, I told him how he could read the data off of his own machine.

My doc has known since 2005 when I was diagnosed with sleep apnea that I am reading my data, he seemed alright with it at the time. I just saw him a couple of weeks ago for my yearly follow up. I mentioned to him I planned on leaving my current job in 16 months and after checking my stats he spent most of the time with me trying to talk me into going into some kind of position where I could help other people starting out on CPAP. He offered to help me in any way he could even help me to find a job with a DME or a hospital sleep lab. I enjoy helping the newbies I run into at our local DME in my small town. For quite awhile I knew more about cpap machines and masks than the respiratory therapists who supplied me. Now my DME has a competent respiratory therapist who is quite helpful. Oh, I have noticed my doc doesn't really care for all the pretty graphs that either of the software I have can generate. All he wants are the numbers, he is quite happy with an excel spreadsheet with my numbers easily scanned while he is talking to me.

Dale

xm41907 wrote:All great comments. Thanks. Just to be clear, it was the DME that sounded huffy and not my doctor. I received my unit on a Friday and this was the following Monday when the DME called to see how the weekend went. I most definitely plan to let my doctor know if I feel things aren't working. My reason for hesitation with the DME is that I'm technically renting the unit from them for the next 11 months. My insurance will not buy the unit outright, and they require periodic compliance checks. I didn't want to piss off the DME first off when it's still their machine. Let's say based upon the data I feel I need to change the pressure. Without actually getting a new prescription, if they saw the change, could they say I am going against my prescription and then the insurance wouldn't cover it? I'm probably just paranoid, but I've heard too many insurance claim issues for all kinds of medical things.

Compliance is very simple: Are you using your machine for an average of about 4 hours a night. I forget the actual percentage, but I think it's about 70% over the course of a month. Someone probably knows the exact figures about this. If your DME tries to make problems with your insurance company, they are WAY out of line. If you're using your machine and your doctor has no complaints about your compliance or treatment, then the DME should stay out of it.

BUT--the reality is--most DMEs won't even look at the pressure settings. They only want to know how many hours a night you're using the machine. Period. End of story. It would take knowledge and time to actually look at anything else, and most people working at a DME simply won't do that.

Whether or not you change your pressures is moot and is NOT related to compliance. If your DME tries to scare you with that, tell them to report to your doctor that you are an active, involved, and well-informed patient taking control of your therapy and that is the root of the problem. Then ask them (as others have suggested), if they would complain about a diabetic checking their glucose levels. No DME is going to report to anyone that a patient is taking control of their therapy.

Don't let your DME bully you. You ARE in charge--it is your body and your therapy. They won't report you to your insurance company as long as you're using the machine....it would jeopardize their payments and that's all they really care about. Heck, a lot of DMEs probably don't even report non-compliance because it does mean cessation of payments from insurance. All this nonsense about you not being able to monitor your own therapy or changes pressures because it could be dangerous is just that--NONSENSE.

Stand up for your rights as a well-informed and proactive patient. No one cares as much about your therapy as you do.

Weezy

The last time I saw my sleep Doc, he asked...'what pressure are you running now/"' I told him what my current pressure was . His response. "Is it working well for you?"

xm41907 wrote:All great comments. Thanks. Just to be clear, it was the DME that sounded huffy and not my doctor. I received my unit on a Friday and this was the following Monday when the DME called to see how the weekend went. I most definitely plan to let my doctor know if I feel things aren't working. My reason for hesitation with the DME is that I'm technically renting the unit from them for the next 11 months. My insurance will not buy the unit outright, and they require periodic compliance checks. I didn't want to piss off the DME first off when it's still their machine. Let's say based upon the data I feel I need to change the pressure. Without actually getting a new prescription, if they saw the change, could they say I am going against my prescription and then the insurance wouldn't cover it? I'm probably just paranoid, but I've heard too many insurance claim issues for all kinds of medical things.

IF you can't talk honestly and openly with your DME why talk at all? Same goes for the doc.

DME's tend to think they own and control you AND your money. Each patient handles it differently. Some sleep docs behave the same way.

The way I look at it - NO ONE cares more about me than me. I wouldn't tolerate any doc or DME coming between me and my healthcare.

Thanks all for the input. I'm definitely changing my attitude regarding coming out of the "closet" as a self-involved patient. Now on to the bigger issue, getting the insurance to approve an ASV, or at least a bipap. The cpap has done nothing for my central apneas and I'm having about 30-50 per hour, most are between 10-15 seconds long each.

xm41907 wrote:Thanks all for the input. I'm definitely changing my attitude regarding coming out of the "closet" as a self-involved patient. Now on to the bigger issue, getting the insurance to approve an ASV, or at least a bipap. The cpap has done nothing for my central apneas and I'm having about 30-50 per hour, most are between 10-15 seconds long each.

fwiw - I believe centrals (or apneas or hypops even) have to last at least 10 sec. or they are not counted.

Yes to both! My DME gave me a big hassle about this, well actually about changing the pressure myself, but I don't care! I've got a great pressure that works for me now. The doctor knows too and he thinks it's fine, whatever works! Oh, I should add I had to be careful about this at first when the machine was still in rental. I couldn't erase the card because DME had to download it for compliance for the insurance. Once that was done and I owned the machine I could erase the card and avoid the mini-vacations the machine takes every week.

xm41907 wrote: Now on to the bigger issue, getting the insurance to approve an ASV, or at least a bipap. The cpap has done nothing for my central apneas and I'm having about 30-50 per hour, most are between 10-15 seconds long each.

Getting a new or different machine is up to your doc NOT the DME. Schedule and appt w/doc and bring in copies of your reports from the DME. Along w/questions you've been writing in your notebook.

If you hand carry the reports you will avoid the ol' fax'd em - didn't get the fax game.

Paul56 wrote:Don't worry about upsetting the DME... as long as insurance is paying they will be quite happy to provide you with a machine.

Agreed. Not only should the OP not worry about the DME, but remember that about 50% of CPAP patients decide to "hang it up" and stuff the unit in their closet. A patient that is involved in their therapy is a patient that is FAR more likely to make it work. They are FAR more likely to attain effective therapy and avoid the serious consequences of untreated apnea.

As others have said ... stay the course, stay involved. It's your life - not the DME's - so continue to be involved.

xm41907 wrote:... Now on to the bigger issue, getting the insurance to approve an ASV, or at least a bipap. The cpap has done nothing for my central apneas and I'm having about 30-50 per hour, most are between 10-15 seconds long each. ...

This can sometimes be more difficult than it should be. Hopefully your doctor is well aware of ASV as a treatment option. Not all of them are. They SHOULD stay current in their field, but not all do. If your doctor is unwilling to help you attain effective treatment, then find a doctor that will help you resolve those residual apneas. Central apneas are just as serious and destructive as obstructive apneas. But unfortunately, not all doctors are equipped (via training) to help patients with central sleep apnea.

Best wishes!

I've got the central apnea/ASV issue posted in another thread so I don't want to stray much from the original topic, but yes, the doctor is involved and is in the process of getting a titration night setup to test me on a bipap/ASV. After I told my DME about the high AHI after the first few nights, they sent me a replacement SD card and self-addressed stamped envelop to send the old one in. After confirming the data was good, it was sent to the doctor. From this point on, I'll send it directly to the doctor if I need to.

See post by Dale92 on Tue Jan 17, 2012 7:07 pm
re. "Oh, I have noticed my doc doesn't really care for all the pretty graphs that either of the software I have can generate. All he wants are the numbers, he is quite happy with an excel spreadsheet with my numbers easily scanned while he is talking to me."

In my last visit with my doc, he suggested that I make a table in preparation for my next visit with him. The table is to show the numbers for AHI, leakage, etc. Although he may well look at the detailed graphs when I bring in my memory card, he too seems more interested in the summary numbers. Two sleep techs, however, that I visit with seem far more interested in the detailed graphs.

Makes you wonder, doesn't it? Any thoughts?

Papit

Yes and approves and approves me making changes.

Let me point out how good it is if you can educate the doctor.

Unfortunately, they run into a lot of hypochondriacs, believers in quack medications, knowitall patients with bad information, homoquackery err... homeopathy, crystal energy freaks, etc. There's a strong bias in the medical mafia to treat the patients as ignorant children.

If you can get them interested in CPAP, that's good. I took my laptop case with some printouts to my last doctor appointment. I was hoping he's show interest and would have shown him SleepyHead if he'd expressed an interest, but didn't push the issue. I'd love it if the doctor got all geeky and drooled over the information that's available, but didn't want to get into the "nutjob patient" category.