Gadget Junkie needs recommendations

blarg · Post by **blarg** » Thu Feb 22, 2007 11:33 pm

Do as you wish. I'm just trying to see why you do things the way you do, and more specifically why you're recommending that course of action to others.

Slinky · Post by **Slinky** » Thu Feb 22, 2007 11:35 pm

AND IF ALL sleep doctors REALLy cared about their patients they would see to it that the patient got MORE than a machine that is ONLY capable of providing COMPLIANCE data but rather that the patient got a machine that is CAPABLE of providing the doctor w/data regarding the EFFECTIVENESS of the patient's xPAP therapy.

Compliance only capable machines should be phased out (like yesterday) and doctors SHOULD see to it that their patients are provided w/an xPAP machine capable of keeping the doctor informed of the patient's therapy results so he can better and adequately care for his/her patients.

sleepinginseattle · Post by **sleepinginseattle** » Fri Feb 23, 2007 12:05 am

blarg wrote:Do as you wish. I'm just trying to see why you do things the way you do, and more specifically why you're recommending that course of action to others.

What I recommended is that the patient listen carefully to what the doctor prescribed. If you want to split hairs about my prescription, then no he didn't recommend a brand of machine but it is quite clear that the equipment to treat my OSA is a CPAP, not an APAP.

There may be some comfort (and related compliance) benefit from APAP but there is no evidence that it is more effective at preventing apnea events. It may, in fact, be a less effective treatment because of missed fast-onset events.

Personally, I want to avoid as many apnea events as possible because they are life threatening. The link between OSA and stroke, heart disease, and other serious health problems is so well documented that it is irresponsible to suggest a treatment option because it suits a person's interest in GADGETS. That's where we differ.

blarg · Post by **blarg** » Fri Feb 23, 2007 12:23 am

sleepinginseattle wrote:There may be some comfort (and related compliance) benefit from APAP but there is no evidence that it is more effective at preventing apnea events.

I never said APAP was more effective at preventing events. I said I thought it was a better treatment. Better in this case doesn't just mean eliminating events, but also allowing a full night's sleep AND the tools to know what's going on and at what pressures. This lets you then use a pressure that's more effective at preventing events.

sleepinginseattle wrote:It may, in fact, be a less effective treatment because of missed fast-onset events.

An incorrectly configured machine of any type will provide less effective treatment. Do you know what your AHI is for each night? I don't suggest an APAP because of bells and whistles, but because they offer the most tools for tracking your treatment and knowing what pressures work best for you. Sure, if you set an APAP at 4-20, it's not going to do a very good job treating you. Just like if you set a CPAP at 6 and your pressure is 18.

sleepinginseattle wrote:Personally, I want to avoid as many apnea events as possible because they are life threatening.

Many on this board using APAPs nightly routinely get AHI scores of less than 1, including myself. I haven't had a single night above 5 the entire time I've been using it. All I'm suggesting is knowing what's going on and at what pressures. There's no requirement that the minimum pressure be lower than your titrated pressure either, like you seem to assume. Nor is there a requirement to use an APAP in APAP mode if you find that a single pressure gives you the best treatment. It's all about figuring out what's best for you. An APAP has the tools to do that.

sleepinginseattle wrote:The link between OSA and stroke, heart disease, and other serious health problems is so well documented that it is irresponsible to suggest a treatment option because it suits a person's interest in GADGETS. That's where we differ.

I see why we've been having trouble communicating here. You seem to have assumed my motives for suggesting an APAP were based on the title of the thread. A reasonable assumption, but unfortunately in this case, an incorrect one. I'd highly recommend an APAP to anyone that wants to get involved in their treatment, which is what this poster seems to want to do.

taterbug · Post by **taterbug** » Fri Feb 23, 2007 6:46 am

Thank you to all who have contributed to this thread. The information and passioned debate add much to the credibility of both sides here.

I have just returned from my sleep study and am getting ready to call the coordinator at the Sleep Center about calling in my prescription.

Let me clear up a couple of assumptions about my original post. The main reasoning for wanting a device with more "gadgetry" is for me to remain compliant in using it. If it's plug and play with no results to look at or settings to try (with Dr.s blessing of course) I'm afraid that I will NOT persist through the initial adjustment period and will give up and quit using it. If I can get involved, it will hold my interest longer. Hopefully long enough to realize the benefits of a good night's sleep for a change.

I certainly don't want to sacrifice proper treatment just to satisfy my gadget oriented nature. I do want to receive the best treatment though, and from what limited research I've done so far, people's "best treatment" as far as pressures change over time, and can even change in the course of a night based on position. Fortunately, this doesn't appear to be an either/or kind of choice. An APAP such as those recommended seems to me to be an added feature set to CPAP, not a drastically different treatment.

Just to relate a similar more drug related example, I have been on medication for panic attacks for many years. Currently it's Zoloft, but I have spoken with my doctors over the years and have arrived at the current medication and dosage by ASKING questions about research that I have done. The doctors didn't come to me and say, "If you don't like this, we can try that." I asked them, "Hey, this stuff is having X effect on me. I read about ABC medication that's not supposed to do that. Can we try that?" Usually the response was something like, "You're the one taking it, let's work together and find something effective for you." But the point is, I had to initiate it.

Rest assured (pun intended) that I will keep my Dr. in the loop and will not go cowboy with treatment experiments.

Thanks again for all the insight on both sides.
Greg

Slinky · Post by **Slinky** » Fri Feb 23, 2007 9:04 am

Wise decision, Greg. Go for it! It happens to echo the same decision I came to. (Which is why it is such a good decision! )

blarg · Post by **blarg** » Fri Feb 23, 2007 6:29 pm

Sounds like you're off to a great start!

Please come back and let us know how things go, and of course if you have any problems, you know where to find us.

taterbug wrote:If I can get involved, it will hold my interest longer. Hopefully long enough to realize the benefits of a good night's sleep for a change.

I also just wanted to add here that it'll also give you the tools to fix problems and know if there are problems. Without software capabilities, all you'd be able to do is go in to your doc and say, "Gee, I don't feel much different." Compare that with, "I'm leaking like crazy." or "I'm still having lots of hypopneas even though I'm not leaking, maybe we should up the pressure?" or even better "I'm having centrals whenever I get up to my titrated pressure, should I bump it down a notch or two?"

As much as the doc wants to help, they can only go with the info they have, and I'm really glad you're taking charge of your treatment like you are, because it means that you can provide them with that info (and yourself too, so you know what's working and what isn't).

preemiern · Post by **preemiern** » Sun Feb 25, 2007 12:54 am

I must say that I agree 100% with Blarg--when I was on straight CPAP, my AHI's were always greater than 10, and while I felt better--I didn't realize how much more better I COULD feel. Now that I am on my auto BiPap, my AHI's are consistently below 1 and I feel 150% better than before!!
CPAP is old technology, and everything in the medical world is forward moving. If we didn't move forward with new technology, we wouldn't be saving half the people we can now save and allow to continue to have a quality of life. It's time for CPAP therapy to move forward as well,and the only way that is going to happen is for patients to speak up and take control of our therapy. I want to know what is going on in my sleep on a daily basis--thus I want the ability to monitor MY therapy just as a diabetic monitors his glucose and adjusts his insulin within guidelines set by his dr.!!!! It's not about gadgets and bells and whistles--it's about having control of what is happening to MY body.
I think APAP therapy is moving us out of the dark ages of CPAP...
Cindy
aka preemieRN

Wulfman · Post by **Wulfman** » Sun Feb 25, 2007 12:08 pm

I'm going to agree with parts of what everyone had to say. MY emphasis is to encourage users to get a machine that has recording capabilities and available software to monitor your therapy. Without it, you're "flying blind".
I think APAPs are fine.....I have 2 of them (and a Pro 2).....but use them in single pressure mode, because it suits my therapy best. My doctor got my pressure wrong. With the software and data collection, I was able to prove it.

If you get a machine with as many "bells and whistles" as possible, you have more variety of features to choose from. If you have them, you can always try them to see if it improves your therapy.....or turn them off if it doesn't.
Obviously, you can't turn on a feature that isn't there.....

Best wishes,

Den

taterbug · Post by **taterbug** » Mon Feb 26, 2007 7:49 am

Thanks for the additional info. This board ROCKS! What did CPAPers do before the internet? I'm guessing they felt really alone and out of touch.

I'm going to the DME this afternoon to pick up my M Series Auto. I wanted to take advantage of cpap.com's prices, but my insurance is NOT a great one for working with you to do anything out of the ordinary. So, I decided to just go ahead and get at least the machine and mask from the local DME. I will show them the prices for the reader and software bundle that online has, and if they can't match it, I'll order that part online. I'm guessing that insurance won't pay for that part anyway.. at least not without arguing with them for several months, years, decades.

Our lovely insurance at work uses a Health Reimbursement Account where I have $1500 to use for the whole family, then a $1500/4000 individual/family deductible, then it goes to a straight 80/20 coverage. So, I would really be helping myself by getting the lowest cost treatment that is effective.

I'll post again here to let everyone know the progress of my adventure.

BTW, my numbers are CPAP - 13 and Flex 3.

Ciao,
Greg

Slinky · Post by **Slinky** » Mon Feb 26, 2007 8:38 am

Do NOT even bother mentioning the software and reader to the local DME. They can NOT sell it to you. Gracious, you don't want to risk giving them a heart attack or an apoplectic (sp) fit! You may NEED them alive and well at some point, maybe.

Be sure to ask you local DME about their assistance w/getting the right mask. That you understand the mask can be THE key in being compliant w/xPAP therapy and ask them what their exchange policy is on masks. It generally takes 10 days to 2 weeks to know if your mask if working for you. It can take that long for a bruised nose bridge or a sore in or on the nostrils or .... to show up.

Pay attention to how thorough they are in fitting any mask you try while there. Do they check the fit sitting up, lying on your back and sides - and even your tummy if you tend to sleep on your tummy at all? Do they check the fit in all those positions WITH an xPAP on at YOUR pressure? Your maximum pressure? Does the machine they are using for the fitting have the capability of showing the leak rate on the LED screen WHILE they are checking the fit? That will give you a good idea of just how good your DME's RT is and how good the DME supplier itself is in providing adequate equipment for their RT to work with.

hayeswildrick · Post by **hayeswildrick** » Mon Feb 26, 2007 9:59 am

Lucky you that you got you're getting your equipment so quickly. With my insurance company, my doctor has to forward them her precription along with the sleep studies, then they have ten business days to decide whether it is "medically necessary." Hopefully it will take less time than that.

For that matter, I'm not even sure that my doctor has received the sleep study from the sleep center yet.

I've gone from dreading this machine to deep desire and anticipation. Wish there was some way I could hurry the bureaucracy along!

Jeff

GaryA · Post by **GaryA** » Mon Feb 26, 2007 12:19 pm

Good luck with your sleep study. I'm also a newbie. It seems that the weak point in the system is the mask. When I started, I got 4 different masks. The only one I wouuld recommend is the Resperonics Comfort Lite 2. The reason is that it comes with an attachment for nasal pillows and an attachment for a small nasal mask. Each has its benefits. The pillows give a more secure fit, but they also can irritate the nostrals. I alternate between the two, sometimed I swap them in the middle of the night. You can change between the two while your head gear is on and connected, without getting out of bed. I hope that is of some help.

Machine	Mask