New diagnosis, some advice sought

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Iskander
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New diagnosis, some advice sought

Post by Iskander » Wed Aug 29, 2007 3:38 pm

Hey, folks, I just had my titration study last night, and have spent a weird day dealing with how well I slept. Spooky.

Anyway, when I was leaving the study, the tech. handed me a sheet of paper with some local health care equipment providers; she'd checked the ones that my insurance covers, and said to pick one "more or less at random" - and they would send me the equipment.

Having heard horror stories about the outrageous billing practices of many equipment providers from a co-worker, I said that I would like to discuss what kind of machine &c with the doctor, and she said that was fine... basically I was stalling until I could do some research. So here I am, to do some research.

I'm wondering first, in case I end up having to go with one of these providers, whether anyone has experience with any of the following (all in the NY/NJ area):
  • PromptCare
    MedStar
    Home Care Supply
    Community Surgical
    A&J Care
Then, I'm wondering if you have any advice on what the best way to approach the discussion with the doctor is? I had a pretty comfortable night with a nose pillow mask and whatever CPAP they were using; it was a CPAP, not an APAP - I asked - but either forgot to ask what make/model the machine was, or just forgot). Should I just go with the flow, or would an APAP make a lot of difference? My natural inclination is to go for a high-end machine with bells, whistles and data interfaces, but that's just the geek boy in me running riot. Should I suppress him or indulge him?

Finally, does anyone have any experience with resolving the underlying causes of apnea non-surgically? Four years ago, when I was 50lbs lighter, I didn't snore at all, and I don't remember being so tired all the time; now I'm a very loud chronic all-night snorer, and I'm exhausted and have apnea... am I crazy to be optimistic that if I drop that 50lbs again (and I'm already 5lbs lighter!) I might be able to forgo the pleasures of pillow-snorkelling?

Any advice would be greatly appreciated, thanks for your time!

- Isk.


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Snoredog
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Post by Snoredog » Wed Aug 29, 2007 4:00 pm

I would take what the sleep lab tells you with a grain of salt.

It will take many up to 30 days just to put together your Sleep Study. Once that is completed you should be seeing your doctor for the results. Be sure to ask for a copy of the PSG from your doctor and insist on not leaving until it is provided.

Next, if a prescription for CPAP is suggested by the doctor, be sure to get the prescription from the doctor's pad, don't let them say "oh we will fax it over for you", if you do that you will never see it should you decide to change DME's. Get the original script, make a copy keep the original and fax over the copy to the DME.

Check with your insurance on how much they will pay for DME equipment. If you have a 50% copay or deductible you would be money ahead just buying a machine online like from cpap.com.

If you go with a Autopap like an AFlex machine it will be much easier to breathe against and it will eliminate future trips back to the lab for additional studies to find your changing pressure. You can buy that machine for under $600 online.

Sleep medicine is a racket and legal license to steal (from you). You can take your cpap script and buy a autopap online.

someday science will catch up to what I'm saying...

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TXKajun
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Post by TXKajun » Wed Aug 29, 2007 4:01 pm

Hi, Isk and welcome to the forum. Sounds like you've been doing your homework so far. Well done!

Now the real "fun" starts for you. Actually getting your XPAP! Of course, that kind of all depends on how you define "fun"! LOL

My own personal thoughts here.....and remember, I'm NOT a Dr., respiratory therapist, DME or anything medical-related, so take it for what it's worth.

#1 and probably the most important thing is to get a copy of your prescription AND a complete sleep study report in your hot little hands!! Don't let the Dr's fool around with this. It's your right and a very important part of your therapy, believe it or not. This is your "baseline"...everything else goes from this. Your prescription gives you the ability to order from whoever you want. A VERY good thing. Also, have the Dr. be very specific in writing the prescription, such as "APAP from 6 cm to 18 cm, heated humidifier, matching softaware and mask of patient's choice."

This is going to be your therapy, not your Dr's, not the DME's, not the RT's. So fight for the best you can get, which means go for one of the high end machines with all the bells and whistles and data capabilities! Monitoring of your therapy will be almost critical in your progress and ability to stay compliant! K? Not to mention, it's pretty cool seeing your numbers every day or week or however often you download the data!

Another thing to keep in mind is that if you get an APAP, then it can be run in both APAP mode AND CPAP mode. This is a very good thing! If you lose/gain weight, start working out or make other life-style changes, it is possible (note I said "Possible"!!) to have an effect on your pressure setting. Rather than have to go back for another titration study, if you have an APAP with data capabilites, you can monitor any changes needed. I've got a sweet little Puritan Bennet 420E APAP along with the heated humidifier (oh yeah, definitely get a heated humidifier!!!!) and the Silverlining software. About the only thing it does not have it exhalation relief...where the pressure bumps down when you breath out. I don't find that a problem, though, even at 14 cm pressure. I used it in APAP for a couple of years and for the last 4 months in CPCP mode. The option of being able to change over is great. Also, the software for this is readily available and you don't need to buy a separate card reader. Of course, other folks will have other recommendations, so like most stuff here, YMMV.

A final thought. Consider buying online here at cpap.com. They have a service that will possibly work with your insurance company and save you a bunch of $$$!

Good luck and ask bunches of questions and don't forget to read all the info under the yellow lightbulb!

Kajun


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amandalee
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Post by amandalee » Wed Aug 29, 2007 4:08 pm

Hi, you've come to the right place for help!
First of all:
Four years ago, when I was 50lbs lighter, I didn't snore at all, and I don't remember being so tired all the time
Losing weight can be helpful for alot of conditions, including sleep apnea. I'm not sure if it would entirely solve the problem though, because even people who are not overweight still have sleep apnea. Only time and a discussion with your doctor could tell whether or not you'd be able to stop using xPAP.
Either way though, making healthy lifestyle changes is always a good idea. A healthy, balanced diet and exercise are a great addition to your health care regimen (be sure to discuss your diet and exercise plans with your doctor and all that, yadda yadda... )
Eventually, once you get used to the mask and machine, you'll start getting a better night's sleep (sounds like that already happened during your study), which means that slowly, you should have more energy to put into your healthy lifestyle changes. Personally, I've only been on the hose for about a month, and while I'm still too tired to put alot of time into planning and cooking healthy meals, at least I'm starting to go to the gym again.

You were smart research the different DME's first before picking one. From what I've gathered on this forum, smaller, locally owned companies are often a little friendlier to work with than the huge, national corporations like Apria. Just for curiousity's sake, you might want to visit billmyinsurance.com (there should be a link somewhere on this page) and get a quote from them. They supply CPAP equipment through our sponsor, cpap.com, who I've read good things about, as far as I can remember. You also might want to look up the various DMEs on your list with the Better Business Bureau: http://lookup.bbb.org/
This page will help you find the site for your local office. There might not be any info, but it can't hurt to look.

For the machines, you could browse through the info on cpap.com and see which ones seem good. Print out the pages for the ones you're interested in, and take them when you talk to your doctor. When you and your doctor decide on a machine, have him/her write out the prescription for the exact machine you have decided on! Hopefully, this will make it harder if the DME wants to screw you around and give you something other than what you want.
By all means, indulge the geek boy here. Research extensively, then try to get the very best machine possible. Your health is priceless.

If you haven't already, click on the yellow light bulb, and there's a ton of helpful information from people who are alot smarter than me.
That should give you a good start!

Welcome to the club!


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Slinky
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Post by Slinky » Wed Aug 29, 2007 4:49 pm

Just keep in mind: even if the sleep doctor includes the software in the script the local DME supplier can't provide it to you. There are ways around that and once you know the machine you have we can tell you how to get your software and cable reader. (So far there's been no problem getting the PB Silverlining software - and no real problem getting the Resmed or Respironics software and reader cable, you just need that info for the latter two from one of the forum members because they are hard to find online otherwise).


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Iskander
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Post by Iskander » Thu Aug 30, 2007 9:22 am

Thanks for the responses, everyone.

Snoredog - what's a PSG? (Is it a term that belongs in CPAPopedia?) I do have a 50% copay, and a colleague directed me here in the first place because he bought an APAP from CPAP.com; I'm fortunate enough to have half-way decent insurance a good enough salary that I think the cost of buying the machine outright is worth a week's good sleep, but I hate to be bilked by the damnable insurance companies and other parasites!

Kajun - that sounds like great advice! I hate being confrontational with doctors... but this is important! I have spent much of this week reading the collective wisdom... when I should be working. Oh well, when I get rested, I'll be more productive!

amandalee - again, thanks... yeah, I'm all pep-talked out, but have started going back to the gym and reducing (and improving) what I eat. I've done it before, so I can do it again, and will keep it off this time! I just had a bit of a scare with outrageous hypertension, which was a major wake-up call. I'm inclined towards billmyinsurance.com and cpap.com anyway - ordering online is almost second nature now.

Slinky - I'm not that worried about finding software. While it's ideologically infuriating that it might be necessary to get warezed software to monitor my own damn health, I'm quite content doing so!

Thanks again, everyone. What a priceless community!


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rested gal
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Post by rested gal » Thu Aug 30, 2007 9:44 am

Iskander wrote:what's a PSG?
PSG = Polysomnogram (sleep study)
ResMed S9 VPAP Auto (ASV)
Humidifier: Integrated + Climate Control hose
Mask: Aeiomed Headrest (deconstructed, with homemade straps
3M painters tape over mouth
ALL LINKS by rested gal:
viewtopic.php?t=17435

Iskander
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Location: New York City

Post by Iskander » Thu Aug 30, 2007 10:45 am

Makes sense! Thanks, rested gal.

- Isk.

snoregirl
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Post by snoregirl » Thu Aug 30, 2007 5:18 pm

At 50% insurance I seriously doubt that you would be better dealing with a brick and mortar DME

They typically charge around $1500 for a machine that you can buy on line for $350 - 550. Then the same for the humidifier. As you can see 50% of $1500 is more than the online cost with no insurance.

If you could managed to get your insurance to reimburse you for the purchase then you might be able to get 50% of the lower, online cost. Some in this forum have had success with this, I personally was not able to make it work.

Another thing about buying online. You can get it quickly. Upload the prescription on your computer, and order. You can have it very quickly.

I know you want to "use" your insurance but at 50% copay you are getting nothing, in fact it is costing you money to "use" it


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roster
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Re: New diagnosis, some advice sought

Post by roster » Thu Aug 30, 2007 5:28 pm

Iskander wrote:......... Should I just go with the flow, or would an APAP make a lot of difference? My natural inclination is to go for a high-end machine with bells, whistles and data interfaces, but that's just the geek boy in me running riot. Should I suppress him or indulge him?

.......
If you have as much as one kilo of "geek boy" in you, then go for an apap with software. I am still stuck with non-data-capable machine.

Rooster
I have a vision that we will figure out an easy way to ensure that children develop wide, deep, healthy and attractive jaws and then obstructive sleep apnea becomes an obscure bit of history.https://www.youtube.com/watch?v=0ycw4uaX ... re=related

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RosemaryB
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Post by RosemaryB » Thu Aug 30, 2007 8:00 pm

Data is the way to go! Because I have a data capable machine, I can monitor changes in my treatment, and it does change. At least some of the software will show you an actual graph of how the night went. There are numerous things I've figured out (some of it I'm infering) due to having the software like:

How does a new mask affect my AHI (quite variable)
Is the GERD causing problems?
Are the apneas clustered together (probably back sleeping REM)
Was my titration done at the right pressure (mine wasn't)
What is the best pressure?

I can't imagine not having the data to guide my treatment.

Now, some machines are "data capable" but will give "compliance data" only. You want one that's FULLY data capable. I'm also glad I got the auto, even though I've settled on a single pressure as best for me. This way, if things change I can do a "mini sleep study" to get more information.

I was able to get an Auto from my DME. But not without quite a lot of research on my part, deception on theirs, and a final battle! (At least I got it, though). It's a local company that has a good reputation in the community. I must say, they do have very good customer service for all the supplies (like filters, hoses, replacement pillows). The only reason to use a bricks and mortar DME is that you MAY get to try on a number of masks. Mine let me do this, which I checked before I chose them.

I usually max out my deductible anyway due to other health costs, and my copay cost is pretty small, so getting it locally worked for me. But it was a big pain initially. If I had a 50%, I'd be getting it from cpap.com.

- Rose

Thread on how I overcame aerophagia
http://www.cpaptalk.com/viewtopic/t3383 ... hagia.html

Thread on my TAP III experience
http://www.cpaptalk.com/viewtopic/t3705 ... ges--.html

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gasp
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Re: New diagnosis, some advice sought

Post by gasp » Thu Aug 30, 2007 8:16 pm

Iskander wrote: . . . I had a pretty comfortable night with a nose pillow mask and whatever CPAP they were using; it was a CPAP, not an APAP - I asked - but either forgot to ask what make/model the machine was, or just forgot). Should I just go with the flow, or would an APAP make a lot of difference? My natural inclination is to go for a high-end machine with bells, whistles and data interfaces, but that's just the geek boy in me running riot. Should I suppress him or indulge him?
I'm prejudiced for the APAP. I have the Respironics A-Flex and have been extremely pleased as I love the exhalation relief it offers. It feels like natural breathing to me.
Iskander wrote: Finally, does anyone have any experience with resolving the underlying causes of apnea non-surgically? Four years ago, when I was 50lbs lighter, I didn't snore at all, and I don't remember being so tired all the time; now I'm a very loud chronic all-night snorer, and I'm exhausted and have apnea... am I crazy to be optimistic that if I drop that 50lbs again (and I'm already 5lbs lighter!) I might be able to forgo the pleasures of pillow-snorkelling?

Any advice would be greatly appreciated, thanks for your time!

- Isk.

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