Newbie Needing Help

[Ruby Vee]

Hubbie snores like a chainsaw, flops around like a mackerel and has long periods of NOT breathing. Being a nurse, I know this isn't a good thing, and recommend he get a sleep study. He said he would if I did. So I did. Guess what. *I* have sleep apnea. (He still hasn't had his sleep study.) I had my titration study 10 days ago, and have been expecting to hear from the doctor. Instead, I got a call today from a DME saying they're looking forward to giving me EXCELLENT service. (Scripting perhaps?) I still haven't heard from the doctor. I don't have a prescription -- I suspect it went straight to the DME.

Having lurked on this board for awhile, I've become somewhat skeptical of DMEs. I know that my insurance will cover a machine -- at least, it would have three years ago when a co-worker got his. But I'm not sure what to expect from this DME.

I understand that I need a fully data capable machine, an APAP if possible and the mask that fits ME the best. I'm not so worried about the mask issue right now, after reading all of you guys. It seems that it will take me several tries to get the right mask, then several weeks to make the whole system work for me. I can deal with that. I'm just not sure how to deal with the DME. Do I have the right to insist on a more expensive machine than the one they suggest if I pay the difference in cost? Do I have the right to get my prescription and take it to a different DME?

If the doctor didn't even call ME before calling a DME, how easy is he going to be to work with if I want an APAP? As a nurse, I'm used to working with physicians -- usually they ask me for my input, we design a treatment plan and discuss it to make sure that everyone understands and is on board with it, and then we work together to make it happen. I rather feel as if this doctor has gone behind my back. Maybe he's used to less patient direction than I'm used to, but I'm a full partner in my care with my primary physician and my GYN. We discuss options, she recommends and *I* decide what's best for me.

All this sleep apnea and CPAP stuff is overwhelming -- but I do want a say in my treatment. I guess the first step is to make sure I get the machine that's right for me. Noise isn't really an issue -- I work nights, sleep during the day time and have a fan on high for white noise to drown out the garbage trucks and dogs barking. But I'd like something that travels well both for weekend cruises on our sailboat and for trips to Europe and to the midwest to deal with aging parents and their issues. Any advice?

[ww]

Hi Ruby. I sent you a private message with some information on machines that may be useful to you. It is very confusing to start with, but then they won't let you have another machine for 5 years, so the initial selection is very important so you can have a data capable machine, buy software so you can monitor your own therapy. Yes, I know, we think the Doctor does this, but most don't and some even allow their patients to have a non-data capable machine that only reads the hours slept. That way neither your or the Doctor have any idea whether you are doing well or not!

[drmgrl]

Welcome, Ruby Vee! Well, you’re on your way, since you’ve found this forum. Like you, I, too, am new to this CPAP business, and yes, it is very overwhelming. However, you will learn so much from the experienced people here. I have found a lot of encouragement and now believe I will actually be able to stick with this process. Navigating in this CPAP world can feel very foreign, but you already have an advantage, since you are familiar with the medical world. I knew absolutely nothing about any of this, but it sounds like you’re right on about what your equipment needs might be. I have the Resmed compact s8 with Humidaire 3ii. The only thing I would change so far is that my machine does not have a smart card, and I’ve since learned that it’s a really important feature. My new mask seems to be working out great for me, but it is a very personal decision. You’ll find what works for you. My advice regarding your DME: do not assume they will inform you or follow-up accurately with you. (mine has been useless!) Also do not hesitate to communicate with your Dr. Don’t wait for him to call you. Be proactive (I know it’s hard when you’re exhausted, but take it one day at a time). Ask him/her what protocol you can expect from your DME (preferably in writing), then make sure they stick to it. Also make sure you understand what your insurance co. requires of you and how the process works (are you renting your machine..How long ‘til it’s paid for…what do you need to prove compliance, etc…). And above all, don’t do what I did: I allowed myself to get so overwhelmed that I gave up and never went back (until recently). Real bad idea in retrospect. I wish I had found this forum at that time (2007). But it’s never too late, and I know you won’t make the same mistake, because you are now armed with great information. Many here will give you excellent tips. And check out the light bulb at the top of the home page. Also, the video tips, etc. It all helps tremendously in beginning to understand the process. And, it’s also a great place to vent, when you need to. If you want, you can read my extremely long “vent” from April 2, – if you have a couple extra hours!! (I had almost 2 years of unresolved CPAP frustration piled up!). It can be eye-opening to read other people’s experiences. You’re not alone. Hang in there! And here’s to sweet sleep for you and your husband!

[drmgrl]

And Ruby, I forgot one more thing: document everything!! You'll be glad you did!

[jda1000]

As a nurse, can you ask around your peers and find out which DME's are better or worse, and which doctors are more inclined to cooperative relationships with patients?

For me, managing my "care team" has been a rather challenging part of my OSA / CPAP learning curve...

[DreamStalker]

I think you are going to do just fine ... the simple desire to be an active participant of your treatment is key.

As I understand, the CPAPs and APAPs have the same insurance code (E0601) ... so if the DME trys to tell you that there is an extra charge for APAP over CPAP, that is a clue that they are either ignorant/incompetant or not interested in your best health options --- find another to do business with as it is within your right.

Call your doctor's office and insist on a copy of the your PSG report (full report not just summary) and keep it for your records. Insist on getting the original Rx as it is good for life in most cases. You may also want to get a letter of medical necessity in case you travel alot.

Best of luck and welcome to the forum.

cool avatar (like a 3D geodynamo animation) btw

[robertmarilyn]

I was referred to a sleep clinic by my internal medicine doctor. I could not understand why I never was able to speak to the sleep doctor associated with the clinic and that the DME wanted me to just come in and pick up my equipment without me having any contact with the sleep doctor. Turns out that my IM doctor requests that her patients are NOT be seen by the sleep doctor and that she will do the follow up. She didn't tell me this when I told her that I hadn't gotten to speak with the sleep doctor and that I wanted to do so. She just insisted I go pick up a machine and mask and start using them.

So I made an appointment with the sleep doctor myself and I saw him one week after I was on the Resmed Escape II. He was upset to find out I was on a machine and had had two tests and he hadn't spoken with me yet but then he saw who my referring doctor was. He told me about her not wanting him to see her patients (she feels like she is saving her patients money by leaving him out of the loop). Among other things, he swapped my machine for an Auto pap and he had me try a mask that fits me much better than the full face mask that didn't fit me.

Probably not the case for you but all that mystery about the sleep doctor not contacting me after my tests and before I got the machine was finally explained by my referring doctor's routine of requesting her patients not see the sleep doctor.

mar

[kebsa]

Ruby Vee, I am new too all this stuff too and i live in Australia where we have a very different system but as an RN i too am quite astounded by just how much the DME's and medical staff seem to work to keep the users in the dark and dependant on their services- I am used to dealing with patients with chronic condtions such as diabetes and i have diabetes and MS, the medical staff involved in care usually would be rapt at havng patients take such an active part in their treatment!

we do no legally require prescriptions for cpap machines, masks etc but most suppliers ask for it and i guess that does protect them a little but the machine i use is a vpap- it is fully data capable but it does not use a smart card, it uses a cable connected to a computer to transfer the data. The machine also weighs twice as much as a standard machine- i do not want to have to cart the thing to the dr or to the DME when i need a review but when i wanted to buy the software to do this so i could take it to my appointment, i found the DME's all expected me to have a Doctors letter giving me permission! now i know when i see him he would be ok with that but on principle i object big time so i have ordered it from cpap.com! I am sure that my Doctor will be happy working with me without relying heavily on the DME but it is a very strange system!

[janp]

I too am new to CPAP ... but have gone through the same issues as you.

From my experience, the DME does act like they are "God". Yet any decisions are made by the doctor's office (after a call by the DME). I found my sleep doctor to stay in the background ... with me having to drag information out of him! Or at least from the techs that run interference.

As suggested, get a copy of all your records ... even if it requires a written request. They cannot deny them. The one item they shouldn't, is your prescription. My doctor's office kept dragging their feet on my request for the prescription ... until I told them I needed a copy since I would be traveling and if I had any issues with the equipment, no local supplier would sell me any CPAP product without a prescription! Then they mailed it!

Another suggestion regarding replacement supplies. Find out from your insurance company exactly what they will supply and when. Don't take the DME's word. I'm on Medicare. Medicare has a document that defines exactly what I get and when. I've worked with 2 DME's ... neither had seen the document. I had to educate them in order to get what I was entitled to.

Oh ... my experience with the DME and selecting a mask ... a fast shuffle, just to finish the process and send me on my way.

The DME will ALWAYS do everything that is in their favor ... at least in my experience.

Good luck!!!

[Ruby Vee]

As a nurse, can you ask around your peers and find out which DME's are better or worse, and which doctors are more inclined to cooperative relationships with patients?

For me, managing my "care team" has been a rather challenging part of my OSA / CPAP learning curve...

I work in a critical care area, which means that although I have lots of technology at my fingertips, folks I'm working with are unlikely to know anything about DMEs. Nor, since most of them are 20 years or more younger than me, are any of them likely to know about doctors . . . sadly, I'm the second oldest nurse on the unit. I've asked around! But thanks for the reply!

[Babette]

I never head from my doctor, either. Just got a call from the DME telling me to come in and pick up my machine. I did, they chatted with me a little about masks, and let me pick from their selection. Went home, hated the mask, and surfed for help on masks. Found some I thought might work better, went back to DME and they let me swap masks. I was wrong on the second mask too, and they were no help.

Found this board, and began buying/swapping masks here and have never looked back.

Go to the DME appointment. Refuse any purchase agreement, only take the rental. If they give you a non-data capable machine, try to refuse it, but if they balk, take it. You can always buy an APAP online at cpap.com, and put in for your own reimbursement with your insurance.

I discovered my DME charged me full purchase after 2 months, and fought them and brought fraud charges against them with my insurance company. I looked up my doc, made an appointment, and found out she's great, and she was more than happy to A) write me as script for an APAP, and B) fight the DME for me.

I returned the "rented" machine to the DME, bought an APAP from cpap.com, and sent in for my own reimbursement. I only get 70% back from the insurance (I just don't have the strength to fight with them about that), but I charge the other 30% to my FSA. Pre tax dollars are better than nothing.

Hope this helps!!!!!
Barbara

[Ruby Vee]

What a wealth of information I've discovered in this group! Thank you, everyone for your replies and the valuable information.

Drmgrl -- your advice to be proactive and call my doctor was right on target. I have an appointment to see him on Thursday afternoon, and we'll discuss the titration study and the goals/treatment plan. I confess I had been just sitting back and waiting for them to call me, but the call from the DME and the realization that I wasn't prepared with enough information to make sound choices was a wake-up call!

jda100 was spot on about 'managing the "care team."' I want to be in control, I don't want to BE controlled!

Dreamstalker -- thanks for the advice on getting the full report. I have the summary of my original sleep study in hand, and I thought that was enough information, but after spending a couple of nights reading on here I can see that there is a lot more to the report than what was on the summary! Thank you for that piece of advice. I don't plan to leave the doctor's office without it!

JanP's advice about getting the prescription in case I need to replace equipment while traveling was a good one. That's what it took to get me the appointment with the doctor. (I called asking for an appointment, the report, and the prescription and although they originally balked at making an appointment for me to speak with the doctor, that last request for the prescription turned the tides in my favor. I suspect the tech thought she was palming off a difficult patient on the doctor -- we'll see! At least I'll get a chance to find out what equipment the sleep clinic has selected for me, and hopefully get a voice in choosing my own! And now that I have more information gleaned from reading you all, I can discuss my needs more intelligently both with the doctor and with the DME!

Kebsa -- it's nice to "meet" another nurse!

And WW -- thank you for the PM. You have given me valuable information and I've printed it out and will be taking it to the DME! I cannot believe how much I've learned from all of you in your "collective wisdom." And I have until Monday afternoon (when I meet with the DME) to learn more.

Thank you!