Sorry if you've all heard this story before!

Good afternoon!

42 year old white male 6'2" 185 pounds. Unremarkable health history. Wife moved into the spare room, tired all the time, yada, yada. Just went through the drill. Two sleep studies. I'm not a patient patient and don't like people touching me but I clenched and got through it. Yesterday Dr. Bette Davis Bedside Manner prescribed CPAP on setting of 8 because I am not overweight? He said that some guy would call me if my insurance would cover it and come to my house to set me up. So:

- What can I expect to happen next?
- What machine/options/hose/mask, etc. should I ask for?
- Any common mistakes I should avoid?

I have absolutely no idea what I've gotten myself into here.

Chuck

1. get a copy of the sleep tests - all the paperwork, not just the cover page.
2. ask the doctor for a prescription for the cpap. this gives you the option of getting it wherever you (and your insurance) want, not where the doctor sends you. with the prescription, you can purchase at any DME (durable medical equipment provider) or off the web, if your insurance permits. The doctor may work with one DME and send your prescription there, but then you are stuck with the equipment they have (may be limited to one manufacturer or style) and if they are not in your insurance network, it might not be covered. So get the prescription from the doctor yourself. And even when you take it to the DME, KEEP A COPY FOR YOUR RECORDS. I've known people who were unable to get a replacement cpap if theirs broke because they didn't have the prescription. They had to call the doctor and run over to his office to get a prescription, just to get the DME to lend them a machine for the couple of days it took to fix the old one.
3. Read the board, do web searches and learn all you can about the various machines, masks, etc. I could recommend some, but every person is different, and what works well for me might be terrible for you. So study up, and ask questions about what features seem most important to you.
For instance, many people travel a lot, and want a small, easy to transport machine. But one of my friends HATES the little machines - he says they're too easy to pull off the nightstand. Same with masks - what works for one might not for another. Get some specific questions - ie. pros and cons of a particular machine, and people who've used it might be able to help you.
Debbie

Chuck,

Many insurance providers are different, so be sure you have all of this pre-approved through them if they require that. This may include THEM getting a copy of your sleep study(s). My "sleep doctor" and his office dropped the ball on this issue and it took me a couple of more weeks to finally get the go-ahead from the insurance provider to order my stuff. He tried to shuffle me off to a local DME provider, too.....before my insurance provider had the paperwork. I DID visit that DME and got what information I could on their prices, available machines, masks, etc. I also checked with some other local DME's and got their information, too.....then bought from CPAP.com.
In other words....do your homework on as much of this as you possibly can before you commit to some kind of contract. For some, renting a machine for a month or two will allow them to try different machines. Maybe I lucked out....maybe I could have spent some extra money and got an APAP. I dunno.....what I've got seems to be working well for me, but everybody's situation is a little different.....like the previous "Guest" posted.

Good luck.

Chuck,

The pressure setting of your device is (should be) based on the pressure they dialed-in on the CPAP you used during the sleep study. They crank it up until your apneas/hypopneas/snores get down to a "normal" level. It doesn't have anything directly to do with your weight, your number of apneas per hour, etc. It is the pressure that is enough to mechanically keep your airway from collapsing shut. If you didn't have a CPAP and mask put on ya during the sleep study, then the Dr. is pulling a number out of his/her dark place and just guessing by looking at you. That ain't so good. Anyway, hopefully you had this "titration" done at the 2nd sleep study.

I happen to be like 40lb overweight, 46, with "severe" numbers (65 apneas/hypopneas per hour), but I'm only titrated at a pressure of 8, so you never know.

You can read many articles in this forum about the advantages of automatically-adjusting PAPs (APAPs), so I won't go into that.

Respironics, Resmed, and Puritan Bennett all make good machines. I haven't used a Resmed machine so I can't comment on how they work, but many seem to do well with them. The Respironics and PB machines have the advantage of being able to run directly off 12V, which is handy for camping or hurricane-induced power outages (run from deep cycle marine battery or other portable power source). The PB machines are very small, light and great for travel. My PB machine (PB 420e) is a little noisier than the Respironics (Pro/CFlex) machine. That's a pretty big deal to me, but not to many others.

In my opinion, I think that Resmed and PB mask systems are superior to Respironics masks. Look for Resmed Activa, Ultra Mirage, Ultra Mirage Full Face, and Swift mask systems. Look for PB Breeze nasal pillows interface. These seem to be about the most successful masks for people. The mask is probably the most important and the most subjective part of the whole deal. If a mask is too noisy for yourself or your wife or if it leaks or is unbearably uncomfortable, then you're going to fight using it.

The mask stuff has been important enough to me to buy several out-of-pocket just so the therapy will work. I regularly use Swift, Ultra Mirage, and Breeze masks/nasal pillows.

Welcome to the club. I've been hosed up for a year and a half and makes a world of difference in how I feel. I find it to be a bit of a nuisance, but definately worth the trouble for me!

Jim

Wow. You cannot know how appreciated your replies are to me. I am apprehensive about this process mostly because of my ignorance. Thank you thank you. I did indeed get CPAP during my second sleep study and took to it quite well. Could I trouble you with another question? I did read on another forum (talkaboutsleep?) the advice to obtain copies of sleep studies and prescriptions. I asked my Doc for these documents but he resisted and referred me to the DME, of whom he spoke very highly.

1. WHY the resistance? Is there some arrangement between he and the DME for compensation after the device is delivered?

2. What is a nasal pillow?

Thanks to you all again!

Chuck

Sorry but more questions just occurred to me.

3. I'm going to call Dr. Pratt's office today and request both the study results and the prescription. You think they will be willing to FAX? Is there anything I can say to them to motivate or coerce them into cooperating? If they refuse, what is my recourse? Will my insurance company (I am fortunate to have tremendous coverage) help?

4. I left the office only with a promise that the DME would contact me "soon". Now I have no idea what that means and from whom I should expect a call. Can I ask him for contact information? I am an impatient person to the point of being annoying and HATE doing things on someone else's schedule or being at their mercy. Especially when I am the Customer.

Chuck,

Let me take a stab at your initial questions:

- What can I expect to happen next?

Your wife will move back into your bedroom, you will have a new lease on life, and you will finally be able to recall how cool it is to get a good night's sleep.

- What machine/options/hose/mask, etc. should I ask for?

Oh, so many options. I travel a lot, and i'm a bit fan of the Puritan Bennett 420 line of machines. Plus, they look so much less like a medical device than the others, in my view. As for a mask/interface, I'm a side sleeper; so I currently am a big fan of the Aeomed Aura, with no side straps. (to answer your nasal pillow question a nasal pillow interface has two soft hollow pillows that rest just inside your nostrils for delivery of the air. Distinguish those from a mask that covers either your nose, or a full face, which covers your nose and mouth.

- Any common mistakes I should avoid?

1) Don't quit. 2) Don't quit. 3) Don't quit.

It sounds as if you really know little about the world of CPAP; but it's bigger than you ever thought. What's more, let's just say, it has the potential to change your life for the better, in ways you could not imagine; but more importantly, it will most likely SAVE your life.

Everybody who begins their treatment has a different story. Some take to the mask on day one, and others, like myself, struggled for 3 months before I could sleep with a darned mask strapped to my face. Now, I'm heading into my third year on CPAP and could not imagine life without it.

Sadly, others just quit. Whatever you do, don't quit your treatment. There are a variety of masks and interfaces out there, and you may have to spend a little $$$ until you find the right fit. I must have cycled through 3 different styles until I found one I liked.

As for your doctor:

First of all, the doctor's office should provide copies of your records upon request. You may have to fill out a form, and it may take a few days; but they should give them to you without complaint. (Mine charged $.45 a page, plus $.50 a page to fax). At a minimum, you should ask the doc for a copy of your prescription. That's all you'll need to get your equipment from a reputable alternative source.

Some may disagree; but I find some of the Durable Medical Equipment industry to be a shameful racket. The same machine the DME provides you can cost nearly three times as much as a machine that you can purchase at cpap.com or cpapman.com. All you need is your prescription. If you hate waiting, you'll hate your DME... all they want is money from your insurance company. You, the customer, represent nothing more than an annoyance. I will always buy my equipment online from one of the several solid companies that are out there.

If your insurance company allows you to submit receipts for your machine purchased online, that's great. GoodKnight 420G was less than $500 so I didn't even bother with my insurance company. For me, it's not worth losing sleep over, so to speak.

Finally, approach all this with a good sense of humor. Sure you look silly wearing a mask strapped to your head; but, your wife won't care, because SHE will finally get a good night's sleep and finally have her husband back. Once you adapt to your treatment, you won't care either.

I can promise this: If you stick with your treatment, you will not miss an opportunity to tell people how CPAP has changed your life.

Finally, I do more reading on this site than posting; but, I can tell you that you can find more support at this site than you could possibly imagine. There is a depth of experience here that can help you with almost any aspect of your treatment. (With the obvious caveat that non of us are qualified to offer medical or legal advice; but most aren't shy about telling you the facts as they see them).


George

P.S. Read everything RestedGal posts!

UPDATE: I contacted the Dr. this morning. They promised to fax the information I requested after I first faxed them an authorization (which I did just now). Stay tuned.

Chuck

CharlesJ, except for his "P.S.", that was excellent advice from Geocom (thank you, anyway, George...lol ) especially when he said this:

(With the obvious caveat that non of us are qualified to offer medical or legal advice; but most aren't shy about telling you the facts as they see them).

Great advice too by Wulfman, by Debbie (Guest) and by UKnowWhatInSeattle who hit on the very thing that jumped out at me in your initial post...the doctor's comment about prescribing a setting of "8" because you were not overweight...if that really reflected his thinking.

I'd be pushing hard for a trial on autopap, set for a range of 6 - 14 initially, just to be sure what pressure I really needed.

But... I ain't no doctor.

Heck, if finances are not an issue and I wanted to get going fast, I'd just get a copy of the Rx that says "cpap" on it, and I'd forget going to a DME at all. I'd order myself one of these two machines (and the software) from cpap.com:

Respironics REMstar Auto with C-Flex and heated humidifier - Encore Pro software and card reader (software comes with a Smart Card, machine does, too.)

or

Puritan Bennett 420E autopap and heated humidifier - Silverlining software (comes with the download cable.)

The clinician's set-up instructions come with them.

Masks...I'd order four at once:

ResMed Swift (comes with all three sizes of nasal pillows.)

Puritan Bennett Breeze/nasal pillows (get pillows one size larger than your first instinct about what size you might need.)

ResMed Activa nasal mask - covers the nose. By FAR the best of the "traditional" style masks, imho.

ResMed Ultra Mirage FF - covers nose and mouth - good to have on hand for congested nights if you have to breathe through your mouth. Also good for containing mouth air leaks until you figure out other ways to deal with 'em.

Those last two masks...you can get great help from the online store about the right size to order. Or, you might waltz over to the DME the doctor wants to send you to, see if you can try those on (noting the sizes) or at least have them measure your face and tell you what size you'd need ...then leave..."you'll think about it."

While you're spending money and gathering what you need fast, also order the Aussie heated hose from sleepzone.com.au being sure to tell them which machine you have so they can send the right hose. A few nights of rainout water dripping on your face would drive an impatient person nuts to do something about it. So, go ahead and get that heated hose.

Good luck!
_____________________________________
My disclaimer: I'm not a doctor, nor have I ever worked in the health care field. Those are just my personal opinions. A mask or machine I love/hate could be completely the opposite for others. Finding suitable equipment can be an expensive trial and error experience.

Could I trouble you all for some more help?

Here's the latest update:

1. Friday received FAX from my Dr.'s office w/polysomnogram & titration results, and another document called "DME CERTIFICATE OF MEDICAL NECESSITY" signed by my Dr. (on the letterhead of the sleep study place "TSD total sleep diagnostics". Highlights:

Polysomnogram:
- Chuck asleep in 10.5 minutes (editorial comment: usually takes much less but I tend to sleep poorly when I have WIRES ATTACHED TO EVERY IMAGINABLE PART OF MY BODY!!!)
- Bed time of 408.0 minutes, Sleep time of 345.5 minutes
- 307 respiratory events, RDI index 53.3 per hour
- 228 obstructive apneas, 79 hypoapneas
- average oxygen saturation 93%, minimum 83%

Titration:
- Chuck asleep in 19.0 minutes (editorial comment: 8.5 minutes longer due to LARGE HOSE ATTACHED TO HEAD!!!)
- Bed time of 433.5 minutes, Sleep time of 351.5 minutes
- 2 respiratory events, RDI index of 0.3 per hour
- 0 obstructive apneas, 2 hypoapneas
- average oxygen saturation 95%, minimum 92%
- "CPAP Pressures: CPAP was initiated at the beginning of the study on a pressure of 5cmH2O. CPAP pressure was increased to a pressure of 9cmH2O. An optimal level of 8cmH2O was achieved and which eliminated respiratory events and desaturations"

2. I still have not hear boo from any DME.

3. I called my insurance company and spoke to a cast of about five different people. Finally got hold of a nice nurse to whom I faxed the above information. She is alleged to call me today with pre-approval. They will allow me to circumvent the DME and submit claims to them as long as I have this pre-approval blessing-type thing.

CHUCK'S LATEST ANNOYING QUESTIONS:

Q1. Do you still advise my getting an auto-adjusting machine?

Q2. Are my results good/bad/typical?

Q3. Why is there air?

A3. To keep your airway from collapsing!

Chcuk

CHUCK'S LATEST QUESTIONS:

Q1. Do you still advise my getting an auto-adjusting machine?

If you can, get an auto machine. It will allow you to collect data on how you are doing with the therapy and will adjust the pressure if needed. Your pressure requirements may change for a number of reasons... if you gain or loose weight, if you have a few alcoholic beverages, if you are taking some pain medication, if you have a cold, etc... The auto may also help you to avoid another one of those overnight studies

Q2. Are my results good/bad/typical?

Your number of events are in the midrange of severity, but your pressure requirements are on the low end. This means you have quite a few apneas, but your airway is fairly easy to keep open. If you were subject yourself to one or more of the circumstances listed above, this low pressure requirement would likely change... thus my personal recommendation to get an auto.

One other important point. If you are able to file to your insurance yourself or if ultimately your insurance will not cover the equipment purchase, look at the cpap.com site to buy your equipment. Online prices are usually less than one third od DME prices (really!) and many people have found that the cpap.com price is close to their out-of-pocket with a local DME even after the insurance payment.

Good Luck!

Chcuk (as you last spelled it),

Your sleep study results are nearly identical to mine, except my RDI was like 65. It sure shows that with that bizzare hose on your face and 8cm/H20's worth or pressure keeps the back of your airway from becoming one with the front of the airway.

I started out with a fixed pressure machine (RemStar Pro) at a setting of 8. After about a year, I got a little unsure of the idea that this one pressure was right under differing conditions of weight, allergies, a beer (or 2), etc. I also wanted a smaller machine, a backup machine, and a way to monitor my own usage, etc. I decided to spring out-of-pocket for an auto machine (PB 420e), with a humidifier, software, the works. I've messed with the settings, monitored my events, and all said and done, it seems like the pressure of 8 is still about right. My RDI is under 1 nearly all the time. I submitted a claim to my insurance, expecting it to be rejected (since they sprung for a fixed machine the year before), but to my surprise, they covered it at 60%...

I guess the moral of my story is that the titration (if done properly) should yield a reasonable prescription, but if you want to monitor your progress (and possibly avoid follow-up sleep studies), an Auto machine is the way to go. Remember, any Auto machine can also run at a fixed pressure. If your pressure needs change over time, the auto machine will change for you.

If money is the main issue, there are several "dumb" (but good) fixed-pressure machines on the market in the $300 range.

This monolog may not have helped much. Push for an auto machine. If you can't get the Dr. or the DME to get one to you, you're way better off with a fixed-pressure machine than you are today with nuthin'.

Okay, cool. I'm getting close. As soon as I get the pre-authorization back from the nice lady at the insurance company, I'm going to pull all the levers and throw all the switches. Now just a few more quick questions:

Q1. Is there a preference for C-Flex? The PB machine doesn't feature it. So should I shoot for the Respironics?

Q2. Can excessive daytime sleepiness cause one to misspell their own name?

Q3. Which is quieter, Resironics or Puritan Bennett? I just slowed down all the fans in my HTPC so I could tolerate it and move the WAF to acceptable range.

Q4. Where on the site are the tools mentioned by RestedGal for mask sizing?

Q5. How quick does cpap.com ship? How about sleepzone and their heated hose?

Q6. Has anyone ever used the heated hose to keep them warm in the winter?

Q7. Will Chuck ever stop asking all these annoying questions?

Thanks again to everyone for everything!

Chuck

Chuck,

Q1. I believe so on both questions. (But those are just my preferences)

Q2. Definitely

Q3. Don't know about the PB's and I'm asleep in a heartbeat so I don't hear mine.

Q4. Call the 800 number for CPAP.COM and they can help you. Basically, you need to measure the distance from across the center of your eyes to halfway between your bottom lip and your chin.

Q5. VERY quickly! (Second question I don't know about)

Q6. Don't have one. Haven't had mine through the winter. I like my air COOL!

Q7. WHAT "ANNOYING" QUESTIONS??? I don't believe there are any of those on this site.....just questions.



I'll defer to someone else on the PB and heated hose questions.

Den

A1. At a pressure of 8 or 9 the benefit of C-Flex for decreased pressure upon exhalation would likely be unnoticed and unnecessary. The PB420E is my choice. Takes up significantly less space on your nightstand, is significantly less expensive, and offers the possibility of adjusting algorithm-driven interventions if your treatment requires it.

A2. Of coorss nautt.

A3. I haven't noticed any difference in the level of noise between my REMstar Auto w/C-Flex and my PB420e.

A4. Don't know.

A5. cpap.com is extraordinarily fast. SleepZone is extraordinarily fast considering it's coming from Australia.

A6. Doesn't get quite warm enough to ward of frostbite in an Arctic blizzard.

A7. Highly doubtful.... and I certainly hope not!