Info for new (and old) CPAP users

[ScottGA]

In hopes of helping others, I am summarizing my experiences with equipment providers and equipment. I was put on CPAP 6 months ago because I was snoring excessively and my wife would no longer sleep in the same room/bed. I am not large(only 5'8 and 175 lbs). I was under an Aenta group plan at the time and was sent to their network provider to get the equipment. The therapist was very helpful, but I have since found out that I was given a Medium gel mask without even a fitting, and I now was measured by a subsequent provider as a 'petite' in the Gel mask.
The equipment has done a great job for me and I now sleep like a baby, other than it taking about 30 min. each night to get the mask adjusted. no snoring, no waking during the night, etc.
A couple of weeks ago, I got a call from the equip. provider and was told that they were referring me to another provider because I was now in BCBS group plan and they were not in their network. I said hold on', didn't Aetna buy my equipment for me and was informed it had just been rented for me. The next day, I called and inquired as to just buying the 6 month old equipment and being done with the whole thing because I didn't have time to fool with swapping out just to be in the same situation. I was informed that I could buy it for , about $1200. Of course, I knew I could get it new from cpap.com for about $500. Instead, I decided to just play out the scenario of going to the new BCBS provider and then just buy me some online if ncecessary. I went to the new provider last Monday and was given the same machine I had asked for(except this one didn't have the C-flex sticker) on it and when I asked about it, I was told, 'your prescr. didn't order it and that feature can be turned on and off and yours was prob. turned off anyway'. I accepted that explanation because they had been so good about getting me properly fitted for a mask, then I decided to switch to a Swift. After I got that worked out, I decided to ask them how much the Gel mask would be and if reasonable , I would just buy and pay out of pocket for it. She said, probably $150-$200; I already knew I could get it at cpap.com for $69. I passed on paying $150-$200 and then she said I 'should just get online and buy it'. She was kind enough to measure me and I needed a petite. Having suffered to get rifd of leaks in the medium Gel mask for 6 months, I was furious at the first provider after that!
I headed out and that night used the Swift for the first time. Boy, what a free feeling!!! I felt much less encumbered by fewer straps, less face pressure, less medically dependent. If my nose itched as it did with the Gel mask, I could scrath the top of my nose or face. No more pressure on the bridge of the nose where it was broke as a child. No more air whistling. The only thing I even felt when I woke up was a little chafing around the nostrils, not a big deal at all. I did go ahead and order a petite Gel mask and it's coming today from cpap.com just to have an alternative. I do feel the Gel mask(assuming you can get a good fit and avoid the air whistling, is quieter, mush less exhaust noise, or so it seems to me.
The only reaon I post this long message is that I have learned a few lessons in 6 months:
o DME/equipment providers will generally tell you whatever they want to or need to because they assume you are either incompetent or have no online capability.
o They will sell you or rent you whatever they want you to have and generally not offer you a choice.
o If they don't MEASURE you for a mask, demand a measurement. Don't just accept what they have the most of in stock.
o Read info on this site; not all masks are the same for everyone, but designs get better and don't be afraid to fork over a few bucks out of pocket if ncessary, to get what you want.
o By all means, get a copy of your signed prescription asap. With this in hand, you can buy online or wherever you want. They would love for you not to have that so that you have to buy locally, but you have a choice. rom what I have learned, the online pricing is the best and you don't have to get ripped off. I refuse to believe that BCBS is really paying $1200 for the equipment when I can buy it for under $600. I think they get billed $1200 to drive up my 20% copay on the rental plan, so that I ultimatley pay the whole REAL cost, bo the insurance carrier. Seems deceptive and possibly illegal, but that is my take on it.
o Again, don;t trust what they tell you. I get the sense that they are accustomed to mostly dealing with elderly and people who are not as computer literate as most of us are, and they just tell people whatever they want to tell them about equipment and pricing. Get your prescription and just buy online if necessary. I am nopt promoting cpap.com BUT once you know what you need and want, online is the way to go. I am in the retail business and the attitude of the DME shocks me. Just try to blow any old excuse, any old explanation by me, and don;t even think of telling me I can get a new mask every six months! By not tellingme that, who do they help? Not themselves, not me, probably just the ins. company. Unfortunately, many of the elderly or less literate are getting cheated by the DME and don;t know it. Any comments????

[NightHawkeye]

Welcome Scott,

It's great that you're doing so well. Congratulations on taking responsibility for the outcome of your own treatment.

I am in the retail business and the attitude of the DME shocks me.

I expect that most folks here would agree with you.

Unfortunately, theirs is the prevalent attitude throughout the healthcare system. Personally, I attribute it to a lack of accountability. . . When's the last time you told your doctor you wanted a refund because his diagnosis was wrong and that you'd gone elsewhere to get a proper diagnosis? . . .If I got my money back for every wrong diagnosis I've had over the years, I probably wouldn't have to work for the rest of this year. (Now, if in addition I could get the money back that my insurance companies have paid over the years for incorrect diagnoses, I could retire today.)

. . . [/rant OFF]

Regards,
Bill

[rested gal]

Your observations are right on target, imho, Scott! Excellent post.

I get the sense that they are accustomed to mostly dealing with elderly and people who are not as computer literate as most of us are, and they just tell people whatever they want to tell them about equipment and pricing.

Absolutely.

They're also accustomed to dealing with people who come through the door shell shocked by the diagnosis of OSA. With almost zero knowledge about the disorder and how it's treated, the newly diagnosed put themselves trustingly into the hands of the "medical professionals".

After all, the doctor knows best...doesn't he? He wants you to have the right machine and mask for your treatment, doesn't he? This is the DME his office is sending you to, isn't it?

Most people don't ever question what they're handed to start with. If they do call the DME with a question about the treatment....

"That leaky mask gouging a sore into the bridge of your nose?"
"Keep trying. You'll get used to it."

"That pressure you can't exhale against?"
"Keep trying. You'll get used to it."

"You feel suffocated when the machine starts?"
"Keep trying. You'll get used to it."

"Bloating? Gas?"
"Keep trying. You'll get used to it."

"Can't keep the mask on all night?"
"Keep trying. You'll get used to it."

"Inside of your nostrils stinging? The air feels cold?"
"Keep trying. You'll get used to it."

"Where did you hear that? Oh....you read it on an internet message board...."(*snort*)
"There's a lot of bad information on the internet. Dangerous information. This is what your doctor has ordered for your treatment. Trust us.

"Call us back if you have any other problems.

And...keep trying."

[ozij]

...And...keep trying."

...To call

Because we won't answer the phone anyway....


O.

[kikisue]

ScottGA,

You can use your insurance AND go online - use billmyinsurance.com, which is part of cpap.com. I just used them to get some replacement parts, and they are filing my BCBS for me. Bonnie is who I spoke with, and she was very helpful, prompt response, etc. I'm sure all the others that work there are the same.

Give it a try - and "keep trying" (Couldn't resist!)

Karen

[sleepybarb]

I got lucky when my doctor gave me the CPAP prescription and the name of a local DME. They were so bad about not calling me back that I went hunting online and found CPAP.com.

[ScottGA]

My BCBS is a POS plan, which means point of service(I'm starting to think it means something else!!) so billmyinsurance said I could not used them for ins. purposes. I received the Gel mask in Petite today and after trying it on, I am furious that for 6 months I have struggled with the medium the local DME got me with the looseness, the wind noise, leaks, etc. I knew in my gut that it seemed too big to get sealed but I kept tightening the straps tighter. I going to try it when I get home just to see how it does, but I bought it purley as a change of pace/alternative; I like the freedom of the Swift better so far. I just keep wondering how many unsuspecting people like me that have been duped by the DMEs. If it weren;t for the online community, we would all be much worse off.

[2SleepDeprived]

I really wish I had found this forum before I went with a DME. I agree----it really does seem like the DMEs bump up the price of CPAPs so that the patient winds up paying the retail price in co-pays. That's what has happened to me. In fact, the cost on cpap.com for the machine and accessories that I use is so close to being what I'm paying in co-pay, it wasn't even practical to try to get the DME to take the machine back. One has to wonder, what are the insurance companies getting out of this? Are they really paying that difference or not? If so, my DME appears to be making somewhere in the neighborhood of a 200% profit.

[NightHawkeye]

My BCBS is a POS plan . . .

When I called my BCBS I was first told that the equipment was covered as rent-to-own, but on further inquiry they told me that the equipment would be covered as out-of-network if I bought on-line. Sounded good to me, so I sent 'em the bill.

Good luck,
Bill

[sleepless_in_ny]

Very interesting post. Along those lines, today I went in search of a new DME. My insurance company said I can use anyone that takes my insurance. I wanted to get a new one cause I think it is ridiculous to order a new mask if I only need the cushion. I want to be able take advantage of getting a new style mask every 90 days until I find the right one for me. In the mean time I only want to replace the cushion in the one that is just okay.

My original DME said they would not order only the cushion, that it is not the way it is done. Bull, so I made some calls. Found a new DME that was happy to talk to me and will order whatever I need no matter how small. They were also nice enough to check and I found out that I am now the proud owner of my machine (Which made changing DME easier).

Bonus...........I found out that this particular DME has an agreement with Resmed, Respironics and FP that if a patient trys a mask, they have 2 weeks to return and get something else if they don't like it. WOW is this great or what. Granted it is only 3 manufacturers but at least they are major and it is a heck of a start.

So the bottom line...............ask and question, don't always take things at face value, like $1200 for a mask, a joke, but it will be on the DME

[Mile High Sleeper]

Well said, ScottGA, Rested Gal, and other posters. I'm also thankful I discovered this forum, thanks to a sleep tech in the sleep lab, early on in my treatment. I've had weeks of problems, but not months of problems (I hope!).

My DME experience: good machine, good nasal mask (by chance) but it didn't work for me (no nasal mask does), good smart card printouts after a struggle to get them. My experience hasn't been as bad as many others.

My not-so-good DME experience, details omitted, not exaggerated:
1. We (large, national DME) lost your prescription and will make it very difficult for you to discover that. The only office that can help you is the local office, but we won’t give you their phone number. We won't answer our main customer service number. When I finally got through after half a day of calling, they said the local number is “internal information” said snippily as if I were asking for something illicit.

2. Minimal help, virtually no mask fitting. Choice of three masks only - a nasal mask, full face, and something else, ignoring my doctor’s prescription for nasal pillows. Fitting was poor.

3. We won’t inform you, the patient, the one who supplied the data about herself, authorized its distribution to the doctor and lab, and who is responsible for her own successful therapy, about whether our machine and mask are working.

4. You need this release form to get your smart card printout but we won’t give it to you. We get angry if you ask for the form. Call Customer Service (the people who didn’t answer their phone and were reluctant to give out information).

5. When I called Customer Service (two numbers): No, you don’t need the form. Bounced to four people.

6. Local office again: Yes, you do need the form. Which opposite answer was I to believe? By this time, I concluded that although individuals in the organization may be caring, the organization was insane, due to its inability to communicate from one part to another and customers or give a consistent answer to a simple procedure. And if they have so much trouble over a simple release form, how could they have the capacity to handle more important and complicated issues?

7. You have to go as high as a regional manager to get actual help. I asked if I were particularly unlucky or if the company was always like this. She said it was somewhere in-between. She also said she had several masks that she could bring to the local office for me to try. Why doesn’t the local office have them? Is it so unusual for patients to try other masks? Would the RT know anything about these masks if they are not part of the local office stock and they can't fit the masks they have in stock?

8. Hospital sleep lab to the rescue with a real mask fitting. The sleep lab gave me a mercy mask fitting, since I was a former patient and my mask was leaking so badly. The sleep tech/mask fitter fitted my current mask, doing many adjustments I was not shown at the DME. Fitting was started in a seated position and was completed reclining on a pillow. I tried on several brands of masks. Each mask was lab tested for leaks while I was on my right side, left side, and back. The tech was very knowledgeable with excellent advice about fitting related to each mask. It was only after this experience that I realized how poor the mask fitting had been at the DME, not a whole lot more than taking it out of the box.

9. DME process improvements – will they last? A few days later, the local DME lead called to tell me the release form was approved. Further, they will now have release forms at the local office so others don’t have to go though what you went through! He said “this should help many other people.”

10. With the second, full face mask (ResMed Ultra Mirage FF): We sent you the wrong size mask. During the fitting, sitting up, it leaked hugely and made loud whistling noises. When I asked about a safety feature to prevent suffocation if the electricity went out, he said a flap from a previous mask had been removed from this model, and that I could breathe from the hose forever (without electricity) without suffocation. Is this true? I think there must be another safety feature somewhere. He gave no warning about regurgitating food and having the ability to remove the mask quickly if I need to cough, vomit, or call for help. (He did see me disconnect the strap.) All not too encouraging. RT said they use nasal pillows only as a last resort because they make the nose crusty.

11. I have not yet found another DME that will be accepted on my HMO. I asked my insurance company customer service for other DMEs. She gave me four. Three didn’t handle respiratory equipment and the other (and one referred by the sleep lab) said I wasn’t eligible on my HMO. This DME seems to be my only choice. Is this legal in my state? I haven't yet pursued it.

Action steps you can take to improve your DME: be polite, assertive, and very persistent. Go up the chain of command. Persist in getting reasonable service. If you can't get it, go elsewhere if possible.

[Mile High Sleeper]

Sound like ScottGA ran into a compassionate RT at his DME when she suggested he just buy a mask online. The DME system may have problems, but individuals in it can still have integrity. We can help educate RTs and others in DMEs. I asked 4 RTs in two DMEs and one sleep lab about rainout and aerophagia (bloating), defining the terms. None of them had a clue. And rainout is strictly an equipment problem, with aerophagia a close second. Bring out their integrity and compassion! Boost their basic knowledge! (I'm on my soap box.) When waiting in line at my DME the other day, I told an elderly couple about PAPillow and http://www.cpaptalk.com . The wife eagerly wrote down the links. If you are so inclined, I invite you to give the following (or just the rainout and aerophagia parts) to your DME as a professional development article for RTs/sleep techs. It comes from the practical experience of y'all and www. cpap.com.

Sleep Apnea Resources
Book
Sleep Apnea – The Phantom of the Night, by T. Scott Johnson, MD, William A. Broughton, MD, Jerry Halberstadt, a patient. 2003. Available at http://www.amazon.com for about $26. Comprehensive, user-friendly, loaded with practical information and written with emotional intelligence. Explains central and obstructive sleep apnea syndrome and sleep study reports. Comparisons of therapies and equipment. Frequently asked questions. Sleep log form, medical information form for your wallet, doctors, and dentist. Internet links.
Internet Web Sites
· http://www.nlm.nih.gov/medlineplus/ency ... 000811.htm US National Library of Medicine and National Institutes of Health offer MEDLINE Plus Medical Encyclopedia. Lots of links to related information such as OSA, snoring, obesity and health, urination at night, nasal congestion, right-sided heart failure, stroke. Link to http://nihseniorhealth.gov/listoftopics.html NIH Senior Health

· http://www.CPAPtalk.com A forum and community for all things CPAP. Excellent site. Forum members have informative, cheerful, supportive opinions. FAQ. CPAPopedia defines terminology. Manufacturers’ product videos. Online chats.

· https://www.cpap.com An online xPAP (CPAP, Bi-PAP, Auto PAP) store. Equipment descriptions are easier to navigate and read and more informative than many manufacturers’ web sites. Product comparisons. Has manufacturers’ videos about equipment and fitting, and printable price list. Email newsletters with product updates. There are several other online xPAP stores.

· Manufacturers’ websites, such as Fisher and Paykel, http://www.fphcare.com . ResMed, http://resmed.com . Respironics, http://remstar.respironics.com/ .
· http://www.apneasupport.org Apnea Support Forum sponsored by the American Sleep Apnea Association.
· http://www.healthyresources.com Information and links to other resources.
· http://www.jalanetipot.com Instructions on using use salt water (1/4 teaspoon salt, pinch baking soda, 1 cup water) to irrigate your nasal cavities, with indirect sinus cleansing as an added benefit. Helpful for stuffy noses, colds, and daily hygiene to get your nose working.
· http://www.sleepservicesofjasper.com/1- ... dy%20terms' Glossary of sleep study terms.
· Professional Organization
American Sleep Apnea Association (ASAA), Washington, DC and local groups. Phone 202.293.3650. http://www.sleepapnea.org/ $25 annual membership includes newsletters and a medical alert bracelet or necklace. Local AWAKE Network support groups meet in sleep centers or hospitals, with speakers, vendor fair, open forum.
Some Initial Problems, Remedies and Equipment
Interfaces - Masks
If you are find that your first mask is comfortable and doesn’t leak, you may not want to explore another until your insurance pays for it in six months. More common is the need to try several masks before finding ones that work. Types are nasal masks, nasal pillows, full face masks, nasal pillows (best used with a protective gel like Ayr Saline Nasal Gel) and prongs (canula). There are many brands and models of masks in each category. One brand of nasal mask may not work for you; another may work well; and the same for nasal pillows, full face masks, and prongs.

With any interface, do what you can to make sure it’s fitted properly. In addition, you may need to do repeated fitting and tweaking to make it work, tested over many nights. Your working unit of time for mask-success is probably daily, or rather, nightly. The timeframe of your doctor, insurance, and DME to approve and get you another mask is probably in weeks. If your mask doesn’t work, this means nights and weeks of frustration while waiting for your next mask and the temptation to give up on xPAP. Discuss with your physician and insurance the option of getting two or three types of masks (nasal mask, nasal pillow, or full face mask) at the start of your therapy, especially if it’s medically necessary. If needed and budget allows, buy one of the less expensive masks on your own.

Advantages to having more than one type of mask: you can continue your nightly xPAP therapy if one mask doesn’t work or it breaks. If nasal pillows make your nostrils sore, you can switch to a nasal mask the next night; or if a nasal mask makes your face sore at pressure points, you can switch to a nasal pillow. If you have a cold and your nose is stuffy or you are a mouth-breather, you can switch to a full face mask. If you want to take a daytime nap but your mask is still wet from morning cleaning, you have a dry back-up mask.

Disadvantages: insurance may pay for only one mask at the start or may pay for medically necessary masks only over a period of months. You may need to buy the less expensive interfaces on your own. (You don’t need a prescription to buy xPAP interfaces and accessories, but consult your doctor.) At the start, it may seem overwhelming to research and adapt to two types of masks instead of one. You may not be psychologically ready to try a type of mask you are resistant to, until you have become accustomed to another type and also found its limitations. (A remedy: balance the level of your resistance with the convenience of having a back-up option on hand.) You may be tempted to not give each type and brand of mask a fair trial. A remedy is to stick with one (for example, nasal mask) until it works or you give up on trying to make it work; then switch to the other type (nasal pillows), while you then continue to explore other brands of nasal masks, and so on.
Hose Management
From https://www.cpap.com: “CPAP hose management becomes more important to side sleepers. The hose should never "hang" between the CPAP and the bed. This weight will put a side force on the mask, causing leaks and discomfort. A portion of the hose should be lying on the bed so that the forces it places on the mask are minimized.” Attach the hose to the mattress and wall or headboard, using a clamp, cup hook, twister tie, or pin, then threading the hose through an elastic ponytail band or Scrunci. The resulting redirection of the mask may reduce venting problems if the mask has been venting on you or your bed partner.
Bed Pillow
If your interface mask and pillow are fighting, try a smaller pillow, so the mask can hang off the side; or a buckwheat pillow, neck pillow, or memory foam pillow, but make sure the pillow doesn’t interfere with your mask if you are a side sleeper. Consider the PAPillow, http://www.PAPillow.com, available through http://www.talkaboutsleep.com .1-877-475-3373, or other online stores. Shaped for xPAP wear. Double edge pillow is $59, mini is $39, plus shipping.

Rainout - Condensation in Hose
If you have a heated humidifier as part of your xPAP in a cool bedroom, water may condense in the hose running between the humidifier and your mask, drip into your mask, and cause leaks. Use one or more of these possible remedies:
· Place your machine and humidifier well below your bed, on the floor or a bottom nightstand shelf, so the 6 foot hose has a more vertical run before reaching your headboard. (You may need a 10 foot hose if you have a high bed.) Hold the hose in place with an elastic ponytail band pinned to the edge of the mattress, and another on the headboard.
· Turn down the heated humidifier to the lowest, coolest setting. If that doesn’t work, turn off the heat but continue to use the humidifier (passive humidification).
· Raise the room temperature.
· Keep the hose under the blanket.
· Wrap the hose in bubblewrap or buy a hose cover.
· Buy a heated hose. Currently, the only add-on heated hose available in the US is the “Aussie hose” from SleepZone in Australia, http://www.sleepzone.com.au/ Hose is approximately US $89 plus $16 shipping; may require a power adaptor from Radio Shack. Allow up to 3 weeks for delivery. If necessary, cover the heated hose with a second hose cover.
· If your mask has its own hose, cover that also.

Bloating, Swallowing Air, Aerophagia
This may be a temporary condition as you adjust to xPAP or a new mask. From https://www.cpap.com: “AEROPHAGIA. The word "phage" in Greek means "to eat." Aerophagia is literally to eat air. In the modern context, it means swallowing too much air, a common cause of gas in the stomach and belching. This is sometimes a result of CPAP Therapy. Unfortunately, the best solutions for this problem are not a catch all but instead an attempt to find the middle ground between needed CPAP pressures.
Here's what you can do:
1. Tell your CPAP prescribing physician. It may be better to decrease the CPAP level a bit and put up with some minor airway problems if we can significantly decrease the bloating. Sometimes this works great, sometimes not at all. An auto adjusting CPAP should also be considered as these machines reduce the average pressure the user receives. Get help settings the maximum pressure on the auto as the highest pressures can make things much worse.
2. As the chin of a CPAP user nears the chest, air has a greater chance of entering the digestive tract. Where possible, keep chin up in relation to the torso.
3. Sleeping in a position different than normal helps keep the air out of the stomach. Try different sleeping positions. Left side, right side, inclined with pillows, or flat.”
See your doctor to rule out other related disorders. More ideas: Try a PAPillow; or neck pillow or memory foam pillow, but make sure it’s compatible with your mask when you sleep on your side. Drink a carbonated beverage in the morning to help belch out gas. Use wind-relieving yoga postures in the privacy of your boudoir.

Buying and Replacing Equipment, Filters, Parts
There are several Internet xPAP stores, such as https://www.cpap.com . Although a prescription is not required to purchase interfaces (masks), filters, hoses, humidifiers, and software over the Internet, consult your physician in deciding on an interface or humidifier. Inform your physician when you do purchase a new interface. Advantages of shopping online: price, especially when buying equipment out-of-pocket (not through your healthcare insurance); easy product comparison, convenience; no “red tape” or complicated procedures, hopefully expertise. May have a broader range of products and product knowledge than your local source.

Advantages of purchases through a local sleep center or DME (Durable Medical Equipment provider): may be already set up for your insurance. Hopefully, the expertise of staff, such as a skilled sleep technician or respiratory therapist for mask fitting. Ability to try on several masks before making a choice. Mask fittings and adjustments are best done when you are lying down on a pillow, because of the effects of gravity and that is how you will wear the mask. The gold-standard of mask fitting is in a sleep center environment where the technician uses lab equipment to test for leaks with each mask you try, at various CPAP pressures while you lay on your back and each side.
© Commentary by Mile High Sleeper, APAP user, based on personal experience, with thanks to members of the forum and community of all things CPAP, http://www.cpaptalk.com/ . January 2006 The opinions offered are not intended nor recommended as a substitute for professional medical advice. Permission to use for free educational purposes.

[rested gal]

Mile High, you've done beautiful work gathering those valuable bits of information together! Wonderful resource.

Oh, and in your saga with the DME, I had to laugh at this:

RT said they use nasal pillows only as a last resort because they make the nose crusty.

Laughing... but shaking my head at the thought of that RT being in charge of selecting cpap equipment for people struggling to "keep trying." People who never know about apnea message boards.

I wonder what that pro thinks about heated humidification.

[Guest]

Oh, and in your saga with the DME, I had to laugh at this:

RT said they use nasal pillows only as a last resort because they make the nose crusty.

Here's another good one: "You want an APAP? Those are experimental machines and not for nightly treatment."

[Snoozie]

Excellent job of composing all of this information!

Here's another good one: "You want an APAP? Those are experimental machines and not for nightly treatment."

That is exactly what I was told!!!