Newbie: US health care, prescriptions, machines

[modags]

Hi -- I'm brand new to this and wanted to poll for a bit of advice. I'm going to ramble a bit, and I'm sure this is something everyone has heard before.

I had a bit of a freakout about being overweight not long ago. (I'm mid-30s, male, and had usually been pretty fit & healthy.) I had my cholesterol checked, etc, and mentioned that my wife complained about my snoring. Doc says, yes, you're overweight, and that can lead to sleep apnea.

I get the sleep study done, and this is where the fun starts. out of the blue, about 2 weeks after the sleep study, I got a phone call from the doc in charge of the sleep lab, who left me a really bizarre and blunt voice mail. All he said was, "You have severe sleep apnea and stopped breathing during the night. Someone from a home medical device company will be calling you soon. Don't forget to contact us again after 6 months." I wish I could share the actual voicemail.

Alright -- this is typical American health care. No numbers or anything to quantify this diagnosis, and an immediate prescription for CPAP with no discussion of what it actually meant to have sleep apnea, or discussion of any alternatives, or what this means for lifestyle, etc. Thanks to this site I at least know what to ask for in terms of numbers, and have a better idea of what the diagnosis *may* mean. Still - hearing "severe" without any indication of what that meant -- just not cool. I left a polite and specific but harsh voice mail and haven't heard back.

The call was about 5 days ago, and since then, I received a voice mail from the home medical device company. I haven't returned it because I don't want to walk in blind. Before I talk to them in detail, I want to know -- and this is probably US-specific -- what exactly does my prescription mean? Is there anything I should tell them before they come to set this thing up? I am more than willing to pay for a better, smaller, quieter device. I feel like it's embarassing enough to have this thing in my house already -- I don't need some big clunky industrial beige thing with hoses sitting there in my bedroom. The one in the sleep lab looked like a rice cooker molested a 1970s humidifier.

I'm guessing this is totally typical.

Anyway -- what's the best approach with the medical device company? I want something small and quiet, and don't care what it costs, quite frankly.

[Slinky]

Well, first off, altho I certainly cannot rave about the sleep doctors in this country (there are a few good ones), the one you encountered does definitely fit at the very bottom of the spectrum and is NOT the average nor was your "notification" the norm. Since you are not in a hurry ....

FAX a WRITTEN request to the sleep lab for a copy of the doctor's dicated results (1-2 pages) AND the full scored data summary report w/condensed graphs (about 5+ pages) PLUS your equipment order (script). These are part of your medical records and in the US you have a legal right to copies of them.

If you haven't received a response w/in a week to 10 days, send the same WRITTEN request via Certified Mail, Return Receipt Requested. Be sure to keep copies of your proof of mailing, receipts and the return receipt when it arrives.

Meanwhile, I take it no insurance company is involved, so go visit this local DME supplier, ask for a copy of all the paperwork your sleep doctor/sleep lab sent over and ask them what selection of CPAPs they have to offer. AFTER you have the paperwork in hand, THEN tell them that at this point you are "just shopping" to see what is available where. Ask how lenient their mask exchange policy is. Then "shop" the other local DME suppliers and see what they have to offer. It IS an advantage to NOT be hampered by only insurance contracted suppliers.

Pop on over to cpap.com and check out the various CPAPs and APAPs and do some comparisons and narrow down the field to those that interest you. Never mind the prices. You have to contact the online DME suppliers and ask about any "unadvertised sale price" they might have on the item(s) that interest you.

[CorgiGirl]

Welcome to the forum, modags. You'll find lots of helpful folks with a lots of experience and opinions about CPAP therapy. I've benefitted from their wisdom over the past four months....

I would start by reading the stuff under the New Users and Our Wisdom icons at the top of the screen (to the right of the CPAPtalk.com logo) and by reading Jules post about where newbies should start. It's separated from the rest of the posts at the top of that section.

My husband and I both have obstructive sleep apnea (OSA) and have auto-CPAPs. My husband's had his diagnosis for five years and me for four months. Your experience with doctors and durable medical equipment providers (DMEs) is more like his than mine. He was diagnosed at a military hospital and got a call from the DME to set up his machine. We didn't know much at that point and have learned a lot more since. I have benefitted from his experiences, too. I took the bull by the horns, scheduled a follow-up appointment with my doc, and selected a DME (which turned out to be a dud, but that's another story).

I think your doc was being a bit alarmist because everyone with OSA stops breathing during sleep. Severe OSA has specific criteria, but you will also want to know how many times you stopped breathing and the duration for each event. Getting a copy of your sleep study so that you know your severity and which positions are better for you will be very important. It's your health record, so they can't deny it to you, but they may try to talk you out of it. Be persistent! Get a copy of your prescription for your own records, too. It sometimes comes in handy when traveling, among other times.

Of course, this is not to say that OSA isn't life-threatening. It is. And you must get it treated. Your risk of heart disease, diabetes, stroke, etc., goes up when you don't get enough quality sleep.

I'd be more worried about getting an auto-CPAP (also called APAP) with exhalation relief (C-Flex or A-flex for Respironics brand or EPR for Resmed, for example) and with getting a machine that is fully data capable so that you can monitor your own therapy. If you doc didn't write the prescription for an APAP, I'd go back to him and ask for it. You can find several threads on the board about justifying one. They tend to be more expensive, so the DME's don't want to give them to you because they don't make as much profit on them. And some docs believe straight CPAP is better. Data from your sleep study would be helpful here, too. I pointed out to my doc that the pressure needed when I lie on my back is vastly different than the pressure needed when I lie on my sides and I don't want to have to put up with a pressure of 15 when I only need 9 on my side. Since it appears that you didn't go back for a second night of sleep study to set your pressure, your doc will probably have prescribed an APAP in order to determine your pressure requirements. He'll probably also have prescribed a data capable machine. But I would want to make sure before accepting anything from the DME. If he did prescribe an APAP for a titration trial, tell him you want to keep it long term.

I am pleased with my machine (which you can see in my signature). It's quiet and not too ugly. It's fairly small and travels well, which matters a lot to me. The Whisper Cap made it even quieter. Many here have this brand, but others are partial to other brands.

I'll shut up now. There's a lot to absorb. Read and read and read and ask questions. We're here to help.