Newly Diagnosed - Getting Overwhelmed

[loganasu]

Hello All,

I had a sleep study last week and yesterday I was scheduled for a follow up appointment.
I the information I have right now is that I have sleep apnea. I don't know how bad it is since I have been unable to speak with the doctor yet.

I am now attempting to research everything I can on this so that I can be as successful as I can, but I don't know what my next steps are.

From what I have read here, I think I understand what to expect when I get the machine, but I am unsure of what happens between now and than.

It sounds like I should be asking the doctor for a specific machine when he writes out the prescription, but how do I know which one to ask for?

The Sleep Lab said that I would be keeping the mask that they have me use at my next study.
Will they just give me one off the shelf? Or will they have a whole selection of masks to make sure a fit is comfortable?

The lady at the lab said that the DME would probably have a machine to me within a week of my next study.
Does the DME deliver to the house? Will the DME assist in setting up the machine? Do they need to go into my bedroom to setup everything?

How does the DME do the reading from the machine? is this something they have to come to the house to get? Do I have to take something to them?


Am I asking to many questions?


SO MUCH DATA!!!!! Information Overload.


Thanks for reading my post. Thank you even more if you reply to my post.

LoganASU
(I have nothing in my profile yet, because I don't have any information)

[robysue]

loganasu,

Welcome to the forum!

I am now attempting to research everything I can on this so that I can be as successful as I can, but I don't know what my next steps are.

You are RIGHT to start doing your research NOW instead of after you've been "given" equipment by a DME that you know nothing about. Here are my recomnedations on what your next steps should be:

• First and formost, I would strongly recommend that you go to Jankinz's excellent blog Mask Arrayed and read What you need to know before you meet your DME. It will save you much confusion and potentially much grief later on.
  
  Second, check out the information at the top of this forum under the light bulb.
  
  Third, on Monday, give your insurance company a call and find out as much as you can about your coverage. And try to get to get a list of multiple DMEs that are considered "in network." And ask if any of the DMEs specialize in CPAP equipment as opposed to being generic DMEs.
  
  Fourth, as soon as you have a list of potential DMEs, start calling them and interviewing them to see if they are worthy of your on-going business for the next umpty-ump number of years. There are many questions you should ask the DME, but the most critical one is: If I should choose to use your company as my DME will you be able to provide a <specific machine or machines of your choice>? Other questions it's worth asking about: What is the return policy on masks that do not work out? Is there a full time RT on staff? Who will help me if I am having troubles eliminating leaks? Also confirm from the DME that they are familiar with your insurance and work with them. (Thanks gasp for the proper wording of that italicized question!)

The idea behind all this prep work is so that you will already KNOW which DME(s) you are willing to work with BEFORE you are asked to sign a piece of paper at the titration study or the sleep doctor's office authorizing them to fax your prescription to a DME of their CHOICE (not yours) or asking you to make a SNAP decision about which DME from a list presented to you when you know nothing about any of the DMEs on the list. Or at least you'll know enough to NOT be coerced into signing a paper authorizing your script to be sent to a DME that you know nothing about and that you'll have the good sense to tell the tech or the doc that you have NOT yet made a decision about what DME you will use and that you will contact them as soon as you have made the decision.

You also write:

From what I have read here, I think I understand what to expect when I get the machine, but I am unsure of what happens between now and than.

You will do a titration study and you may or may not get a chance to have a meeting with the sleep doctor to go over the results of both your sleep studies.

At the titraion study you will sleep with the CPAP mask while the tech makes adjustments (via a computer in another room) to the pressure. The adjustments are based on an algorithm that tells the tech when to raise the pressure and when to potentially lower the pressure. Detailed data about how many events you have at each pressure level will be kept. If you wake up at any point in the night feeling distressed about the pressure---let the tech know.

The consultation with the sleep doctor (if there is one) may occur before or after the titration study. My impression is that most folks who get to meet with the sleep doctor tend to meet with him/her after the titration study. But in my case, the consult with the doc took place between the diagnostic study and the titration study. He should go over the results of the test with you. He may ask you if you have any questions. Or he may gloss over stuff in very broad language: You quit breathing n times an hour all night long and that's why you have to have CPAP. I'd suggest bringing a written list of questions that have occurred to you based on the research you are currently doing. Certainly ask such things as: Is your apnea better or worse in REM? Is thee a positional component to your apnea? What was your lowest O2 reading? Were O2 desats the major problem or were respriatory related arousals the problem? Are your events mainly apneas or hypopneas or both?

WARNING: You MAY be put under some pressure to sign paper work that allows the doctor or sleep lab to determine what DME you will use. Do NOT sign any paper authorizing faxing your CPAP equipment prescription to a DME that you do not know the name of and that you have NOT personally pre-screened by at least a chat over the phone.

After the fax of the script is sent to the DME, you'll either be contacted by them or you should contact them. There will inevitably be paperwork that must be signed. Be sure to read it. Particularly the description of the machine they promise to set you up with. If the description is VAGUE (A Resmed S9 CPAP) insist on having the model information put in the document BEFORE you sign it (A Resmed S9 AutoSet APAP or a Resmed S9 Elite CPAP). This will make it harder for the DME to do a bait and switch on the machine---letting you believe they're ordering an S9 AutoSet, but they give you an S9 Auto Escape---which you DO NOT want since it does not record full efficacy data.

Then you'll either go back to the DME, possilby choose a permanent mask, and get equipment. Or they may come to your house. And you will likely sign a lot of papers (again). Be sure to read what you are signing. Whether the DME comes to your home to set the equipment up depends on the DME. Mine didn't. But CPAPs are easy to set up and the RT went through the whole process with me and then asked me to do the process while she watched.

And then you'll try to sleep with the machine in your very own bed for the first time. Be prepared for this night to be very different from the titration study.

It sounds like I should be asking the doctor for a specific machine when he writes out the prescription, but how do I know which one to ask for?

Some docs will accommodate you and some won't. Mine wouldn't hear of writing anything but a generic: CPAP @ 9cm with heated humidifier and mask of patients choice. It was up to me to find a DME that would set me up with the S9 AutoSet that I wanted.

As for which machine? The two main rules are:

• (1) Full efficacy data is critical to get. Reject any machine that is NOT a full data machine
  (2) Auto PAP is more flexible and can be set to run as a straight CPAP if you do better in CPAP mode. But no CPAP can run as an APAP. So aim for an APAP if possible

The two most common APAP machines you see listed in people's signatures are the Resmed S9 AutoSet with EPR or the Resprionics System One Pro with A-Flex Plus.

The Sleep Lab said that I would be keeping the mask that they have me use at my next study.
Will they just give me one off the shelf? Or will they have a whole selection of masks to make sure a fit is comfortable?

It depends. The lab that I used for my titration uses "disposable" masks that you go home with and there was only a choice of style: nasal (that had a gel cushion), a pillows mask with an irritating double short hose, and a full face mask. But the intention was that while you went home with this mask, you'd get to pick a proper---non-disposable mask at the DME when you got your equipment. Basically my lab was buying three of the cheapest masks out there in BULK and not bothering to do any kind of disinfectant work on them. I could easily have continued using the pillows mask I took home and even disassmbled it for washing. But I wound up throwing it away as soon as I got my equipment with my Swift FX pillows mask.

But other labs do try to help you figure out what "real" mask might be a good one to start with. You might want to call the lab before hand and ask some questions.

The lady at the lab said that the DME would probably have a machine to me within a week of my next study.
Does the DME deliver to the house? Will the DME assist in setting up the machine? Do they need to go into my bedroom to setup everything?

Taking "up to a week" to get the equipment to you is not out of the ordinary. But as I said earlier: DO NOT LET THE SLEEP LAB OR SLEEP DOCTOR CHOOSE THE DME FOR YOU. If you let the sleep lab or sleep doc pick the DME, then you will also de facto allow the DME to choose the equipment. And that's how lots and lots of folks get stuck with compliance-only machines like the Resmed S9 Escape, the Resmed S9 Auto Escape, and the Resprionics System One Plus with C-Flex.

How does the DME do the reading from the machine? is this something they have to come to the house to get? Do I have to take something to them?

With my DME, I simply put the SD card in the mail (in a mailing envelop they provided) and sent it to their central office that deals with getting the compliance data to the insurance companies so they get paid. Then they sent the card back to me through the mail.

Am I asking to many questions?

There's NEVER too many questions! And a corrolary: There's never a question that's too dumb to ask either. Keep asking questions. That's how you'll learn.

Best of luck

[beckah]

The only thing I would add (pardon me, RobySue, if you already mentioned this) but I would ask for a copy of the RX for my machine and mask and a full copy of my sleep study, detail not summary report. It is always good to have a copy of both things for your own records in case you have questions later.

Welcome to the forum, keep asking questions and you will do fine!

[Breathe Jimbo]

The most important thing is to get a machine that is (a) fully data capable and, therefore, provides efficacy data, and (b) uses a standard SD card. Refuse to accept any machine that records compliance only, as that will tell you nothing about whether your therapy is working well or not.

Most would agree that the best machines are ResMed and Philips Respironics. Other companies make good machines, but you cannot go wrong with these two manufacturers.

If you get a ResMed, make sure it is an S9, not the older S8, and make sure it does not say Escape anywhere. The S9 uses a standard SD card; the S8 uses an inconvenient, proprietary data card, for which an expensive and almost-impossible-to-find card reader is required. The Escape is compliance only. The Elite has full data capability and, therefore, provides efficacy data. The AutoSet has full data capability; the Auto Escape does not.

If you get a Philips Respironics, make sure it is a System One PRO, not Plus. Anything before a System One is an older machine. The PRO has full data capability; the Plus does not.

You will need to have the titration study to determine whether a simple CPAP will be sufficient, or whether your will need a bi-level (BIPAP or VPAP - same thing) or other, more sophisticated machine (e.g. ASV) for special problems. Most people can use a simple CPAP machine. The APAP is akin to a fancy CPAP that can increase the pressure temporarily in response to events.

Don't let anyone push you around. It is your health and your life. DMEs are notorious for trying to sell the older, cheapest, compliance only machines, because they have a larger profit margin with those. Make it clear to any DME with whom you deal that you are prepared to go elsewhere if they are not willing to provide the machine that you want -- fully data capable and standard SD card.

And if anyone tries to give you a hard time about the full data capability, the irrefutable response is that you insist on having a machine that provides efficacy data so that you can know whether the therapy is working, the same way a diabetic monitors his blood sugar, and the same way someone with hypertension monitors his blood pressure. The efficacy data show how many apneas and hypopneas you are having each night with your PAP therapy. This information is not "bells and whistles"; it is essential to knowing whether your sleep apnea is being treated effectively.

Good luck! Please report back with any other problems. Ask any questions that you have.

[Muse-Inc]

If you have a high deductible or your insurance company won't pay for equipment, you might find it less expensive to buy it from our host https://www.cpap.com rather than a local DME. Most insurance companies set you up with a lease-purchase that lasts for months. In my case, I ending up paying about 3 times what my basic CPAP machine would have cost if I'd bought it online. I can get the mask I wear all the time for $119 from our host or I can let my ins pay nearly $600 for the same mask -- this presents a dilemma for me: do I let my ins buy at an inflated $ (with no cost to me) which just jacks up the premiums for everyone or do I fork overthe $ and buy it myself -- my ins co says cpap.com is not 'in-network' so won't reimburse me.

[Mary Z]

My RT from the DME and I always meet in my living room. Just choose a place with a table and electrical outlet nearby. I would try to begin to develop a relationship with the person who delivers the machine so I couuld use them for backup whan I have questions later, try to get a phone number or email address. My relationship with my RT has been a great advantage. Remember there are no dumb questions. You have gotten a lot of good suggestions. I would try to distill them to a list and write down the answers. The more interest and knowledge you show the DME the more they should be willing to teach you. Keep it as simple as you need to so as not to get overwhelmed with information. You're starting on a new adventure and it's pretty exciting to get your first machine and start to enjoy the benefits of better sleep.
Good luck and have fun.

[sleeplessinthevalley]

loganasu, It seems as though we are at the same point in our CPAP adventure. It would be fun to compare notes as we go along. My titration is Wed. I am a little apprehensive since my initial sleep study did not go perfectly. I only slept a total of 94 min., but it was enough to indicate severe OSA. I will be taking an Ambien for the titration, so I hope that helps. I have never taken a sleeping pill before.

I have been contacting my ins. and various DMEs in order to gather as much info as possible. This website and forum is a godsend.Without it I would know basically nothing! My PCP indicated that he wanted the report so I guess I don't have a Sleep Dr. He may refer me to one after titration?? If I hadn't gone to pick up my initial report I wouldn't know anything except that I needed to come back.

I want to thank all of the experienced people who take the time to answer our questions.I feel as though now I have at least a fighting chance of getting the best equipment I can in order to make my experience a successful one.

[loganasu]

WOW.... I'm overwhelmed (in a good way) with the responses already.

robysue... Thank you so much for all that information and the quick response time.

Everyone who has responded so far, thank you taking time to share this information with me.





And sleeplessinthevalley, after looking at your posts, it looks like we are exactly at the same spot. Look forward to pushing through the challenges with you.

[robysue]

To both loganasu and sleeplessinthevalley,

As others have said, you want to aim for an APAP: They are billed under the same insurance code so a prescription for a CPAP machine is all you need to for a cooperative DME to supply you with an APAP.

But just to make it extremely clear about which machines from the three most common "brands" of machines are acceptable and which are not, here it is by manufacturer.

• Resmed. You WANT the S9 AutoSet (APAP) or the S9 Elite with EPR (CPAP). These are FULL efficacy data machines. Avoid the S9 Escape with EPR and the S9 Auto Escape. They only record compliance data.. Also avoid S8 machines---they are no longer being manufactured and they represent outdated equipment. In addition they require a proprietary data card and card reader to download the data into ResScan and the card readers are no longer sold in the states.
• Resprionics. (Also knownn as Philips Respironics.) You WANT the System One REMstar Auto CPAP with A-Flex (APAP) or the System One REMstar Pro with C-Flex Plus (straight CPAP). These are the FULL efficacy data machines. Avoid the System One REMstar Plus CPAP with C-Flex or the even more limited System One REMstar DS150 CPAP. They only record compliance data. Note that the REMstar M-series is no longer being manufactured and represents outdated equipment and requires a proprietary data card.
  
  For the PR System One straight CPAP machines, you have to be VERY careful to read the FULL name of the machine since seem to be intentionally confusing:
  • The System One REMstar Pro with C-Flex Plus records FULL efficacy data.
  • The System One REMstar Plus with C-Flex records ONLY compliance data.
• Fisher & Paykel. You WANT the Icon Auto CPAP (APAP) or the Icon Premo CPAP (straight CPAP). Avoid the Icon Novo since all it records is compliance data. The older, outdated machines are all called SleepStyle something or others.

Final piece of advice: The S9 AutoSet and Elite have far more and better quality data on the machine's LCD than either the System One Auto and Pro or the Icon Auto and Premo do. If you don't want to download data to a computer every day, that should be a consideration when choosing between the three lines of machines.

Best of luck as you start contacting those DMEs

[Kilgore Trout]

Everyone's already told you a lot, so i'll just tell you from my experience as a beginner to the CPAP life that these are good people who know what they're talking about. As a newly diagnosed patient, it's easy for them to railroad you in to something without thinking twice--you can take control of all of this. You an pick your DME, and pick one close by. You can get copies of every paper related to your study. You can have the doctor sit down and talk you through what the hell is going on, and you can tell them you need features X Y and Z on your machine.

YOU are in control of this, no matter what the doctor and DME says. Find out what your insurance pays for, and be prepared to tell the doctor/techs/DME that you need to stop the process if you're not feeling comfortable with the care you're getting.