Upset Newbie, please advise

agree with FRH

This is a choice. When I do weight lifting, I can see my progress from week to week objectively. This way I know that all my efforts give some progress through numbers, not juts good feeling. Feeling is important but it is very subjective - numbers are objective.

some do not care as long as they feel fine, but some are "obsessed", so be it, there is no need to apologize and feel bad about it.

Dear Upset Newbie,

You are not alone. May I suggest you read my post directly above yours, ResScan Software 3.10 Patients Need Not Apply. Like yourself, I too, am a newbie. My sense of humor is twisted. I definitely have “trust” issues, especially dealing with health-care “non-providers.” Truth be told, I have little respect for authority. It's sad to say, but I am in a War time state of mind when it comes to my sleep apnea disorder. Information are your weapons. You become an information assassin. You want what you want. You are entitled.

What did I do? I found a “killer” pulmonologist who supports me 100% Fortunately for me, he too, has sleep apnea. He is patient friendly.I researched CPAP and APAP machines advertised on CPAP.com and decided upon the ResMed S8 AutoSet II. Dr. Aaronson immediately agreed with my choice and wrote the prescription. It's a great machine. Plus, it's quiet and doesn't disturb my wife.

How does one become an information assassin? It requires tons of reading and time. There are no short cuts. It is no fun. It is boring. I'd rather have a beer and burger.

Step 1. Go to CPAP.com This is sleep apnea COMMAND CENTRAL. Lots and lots of informational weaponry. Go to CPAP.com's Web PAge.Scroll down and discover the CPAP Learning Center. click <Learn More> This brings you to the CPAP FAQ Learning Center. Immediately click Sleep Apnea 101 and read every word. This is no fun.It sucks. If possible print out the entire document.

Step 2. After reading all the FAQs, return to CPAP FAQ Learning Center. Underneath Sleep Apnea 101 are 5 sub headings: New User Basics, Side Effects, Sleep Study, Definitions, Research. READ EVERY WORD IN EACH SUB HEADING. Reading all this is no fun. It sucks.

Step 3. Return to the CPAP FAQ Learning Center. Click CPAP Equipment. Scroll down and read CPAP Equipment FAQs. Finished. Please return to the CPAP FAQ Learning Center. Underneath CPAP Equipment are 7 sub headings: CPAP Masks, CPAP Machines, CPAP Humidification, CPAP Supplies, CPAP Software, Power Solutions, Comfort and Cleaning. READ EACH AND EVERY WORD. This is no fun. It sucks.

CONGRATULATIONS. You are now a MONSTER INFORMATION ASSASSIN. Wreck havoc upon intractable DME's. Take no prisoners. Take no crap. CPAP FOREVER! Carl

obrosk wrote:Well, I used my half hour lunch to call Lincare to inquire about a different machine (as mine does not provide data) and at first the representative acted as if she had no clue what I was talking about (data? what kind of data?), then she said I didn't need to know any of that (that that information was only for doctors and clinicians to know), then finally she said I wouldn't know what I was looking at anyway. I told her that I'd been reading about the different machines online and on here and that I would like a machine that could provide data on how I sleep at night. She told me I should stop reading what other people say and just trust in the machine I have.

I told her I was going to ask my doctor for a different machine and she went into a complicated explanation about data capable machines needing (a special antenna) and that the company only provides the data if you get special permission to download it from their server and that there is no such machine that can give you daily readings. (???)

I am soooo frustrated! I am not usually an ignorant person, but I don't know what to do. This has been hard enough to deal with without this additional frustration. How do I go about getting a machine that provides data? Any advice would be appreciated.

Last I knew, every person in these United States has access to his or her medical records. Period. Just because such information is used by MDs and clinicians to help assess your care does NOT mean that you have no right to it, nor should you be denied access to it. As for the crap about your machine needing a special antenna, etc... Well, there is the ResTraxx system (for S8 and S9 machines Elite or better, I believe), which is an antenna-based system (connects over GSM cellular network), but while Lincare may have a system set up to download data transmitted with that system, that is not the only way to transfer data from many of these devices. S8's use Smart Cards and S9's use SD/MMC cards. I don't know what the PR machines use, but rest assured (no pun intended ), you can download the data yourself if you have the proper machine and software.

Here's my advice for getting the best equipment for your needs:

1. Be informed. Since you're here, you're well on your way to meeting this suggestion. Check out the Wiki and New User areas, in case you haven't already.
2. Learn about the data capable machines. Why, exactly, do you want one? What, exactly, will you do with the data? Why is a basic machine insufficient for your care? Know the answers to these questions before seeing your doctor to ask for a replacement machine.
3. Research DMEs in your area who accept your insurance plan (if in-network coverage is required for reimbursement or reimburses at a better rate). Your insurance provider may have an online database for members to search for local providers (though DMEs may not be the easiest category to search). Chances are, Lincare is not your only option. Your MD may have referred you there initially based on your insurance info and their knowledge of local DMEs at the time. Other DMEs may be better about providing a wider range of equipment based on patient preference, MD prescription, or both. (As mentioned elsewhere in the forum, a prescription for a CPAP machine is sufficient for a DME to provide you with an APAP machine, but not the other way around.)
4. Be ready to make the argument to your doctor. Make sure your doctor is willing to partner with you regarding your therapy (as opposed to insist on mowing you over with his/her opinions).
5. Do not lose your cool. I know--this one is hard, especially if you're sleep-deprived and frustrated after getting nowhere on this issue for a while. But if you have solid reasoning that you can present to your doctor, your doctor is far more likely to work with you rather than dismiss you.
6. Be courteous, but firm. You are the patient, you're the one that does not feel well, and you should be an active participant in your therapy.
7. Recognize (and verbalize) your doctor's expertise (after all, you should be paying them for more than a permission slip to get the equipment you want/need). Your doctor should have more knowledge of this condition than the average layperson. OTOH, if you've read much of what's here, you also have more knowledge than the average layperson, and you're the one in need of the therapy. So, don't let the doctor run over you, but engage in a conversation about your treatment options. If your doctor dismisses your concerns and is unwilling to work with you, consider that as a factor in deciding whether or not you change doctors. (You may, after all, have other compelling reasons to not switch.)
8. Don't blindly go to whichever DME your doctor refers patients to. If you've done your research as mentioned above, you will know where to take your prescription. If your doctor has concerns, don't dismiss them, but indicate why you would like to work with a particular DME, and see if your doctor will verbalize his/her concerns with the DME you would like to work with.

In your case, if a different DME can take care of you, you may be able to get the new equipment without an MD consult. However, chances are, if you find a new DME, they'll want a new Rx from your doc. IMO, you're best off having your doctor in the loop up front, even if simply a courtesy call to the doctor's office indicating that you're considering changing DME providers and may request a new CPAP/APAP device.

Carl, I loved your entire post. Yeah, I appreciate a twisted sense of humor.

rnb4carlt wrote:It requires tons of reading and time. There are no short cuts.

I've often said -- if someone diagnosed with sleep disordered breathing wants to take up the reins of their own treatment, they should dig into this message board...reading, reading, reading... as if they were a medical student studying for the exam of their life.


obrosk:[/b] My suggestion would be to have your doctor's office write out a prescription for a specific machine. If your current DME won't fill that prescription as written, then I'd let them know you'll be looking for a new home health care provider. Of course, check with your insurance company first, to see if there are other providers you can go to for equipment.

I'd ask the doctor's office to write out a new prescription with a specific machine on the prescription, filling in the blank with the pressure you were prescribed:

ResMed S9 Elite II CPAP @ ___ cm H2O and heated humidifier

Even if your DME doesn't carry ResMed machines (but I'd bet Lincare does) the DME could certainly order the machine.

Every word in the machine name matters, so be sure the doctor's office includes every word written there when they make out a new prescription for you.

If the doctor's office balks about giving you a new prescription with a specific machine all spelled out, come back here. You'll get plenty of suggestions on how to deal with that, if that happens. Hopefully, you have a cooperative doctor's office.

Carl, I loved your post too! I'd much rather be called an Information Assassin than just plain old Obsessed!

Ok, so the doctor gets back to me and I'm dumbfounded by what he says. He says there is nothing wrong with the machine I have, he uses the same one (!) and you can tell it's working because the air is coming out (!!!!!!) He said the sleepstudy gives him the information, he prescribes the machine that I need. The more I insisted upon a fully data capable machine, the more idiotic he made me feel. Finally he says to call my insurance and see if they will approve a different machine. So I need to call Aetna today on my half hour lunch.

All the advice I've gotten here has been very supportive. Thank you for your help.

LinkC wrote:

SleepyT wrote:I disagree Harry....no self obsession. Just the need to know what is going on with our therapy. .

I disagree with that! It isn't a "need"...just a preference. The vast majority of xPAP patients do just fine without self-monitoring and tweaking. Others, like us, PREFER to know what's going on with our therapy.

(Just an observation...the fact that you see it as a "need" underscores an obsession with it.)

Forgive him for he knows not what he flatulates. Just because he had his need met should not deprive you of yours.

Of course you "need" to be able to monitor and manage your efficacy data just as someone with a diabetic condition. Unless you are feeling lucky, demand a data capable machine.

Perhaps once you have all the tweaks worked out of your therapy, the data may become less important but everyone should start off with a data capable machine and learn what it means and how to use it. Consider buying out-of-pocket from an online vendor ... especially if you have not yet met an insurnace deductible.

Best wishes to all who run into "free-market" health care system.

Ok, so I called my insurance and Aetna said to just have Lincare fax them different machine info and Aetna will let them know which ones they will cover. Sounds too easy, right? Well, Lincare said the plan I'm on doesn't allow for other machines (if this is true, why didn't they tell me that in the first place?) Lincare said a fully data capable machine would cost me about $800 out of pocket. There is no way I could afford that. Lincare said if I was that concerned with (finding out if the machine was working for me) that they could pick it up and return it in the same day, providing my doctor with a report of their findings. All I had to do was call my doctor and have him fax them a prescription that says "download unit". So I called my doctor and left a message for him.

I think I'm going to call Aetna back tomorrow and ask them if there is any other provider (other than Lincare), because I don't want to get stuck with this machine if there is a better one to be had.

Sounds like you need a new doctor AND a new DME.

So sorry you're having to go through this, but fight the good fight and you'll get what you need for good therapy. So many have been through the same thing. Keep us updated.