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DME and adjustment to therapy
#1
Hi all, new here, and have a couple of things still bothering me after reading through all the awesome success stories above.

I recently had my first sleep study, and a few days later got a call asking me to come in for my second STAT. The tech told me when I went in for titration that I had an AHI of 127 and my O2 levels went down to 45%, which was why they threw oxygen on me during me first study.

So I had the titration study, and apart from having my mask switched out a ton of times, I slept great.

And now, I've been waiting. And not exactly sleeping. It seems like now I know, I'm scared to sleep at night. Thursday I have my follow up,appointment and hopefully an rx.

My first question is this - since I've been so desperate to get a good nights sleep, how do I negotiate the fastest route to a machine with a DME company?

Also, I'm facing some, I guess sadness mixed in with the excitement of actually getting some sleep. I'm 37, and I'm going to spend the rest of my life hooked up to a machine? Where will those leisurely sleep in mornings go? Nights out when you fall asleep on the couch and never even get to bed? Ummm, romantic stuff with the husband?

How did some of you overcome the "oh my god I need a machine to breathe for me at night and it will never be normal again" feeling? I can't be the only one who has this?
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#2
Welcome to the Forum!

Sadly there is no "fast track" each DME is different and it depends on your health insurance a lot. You want to have the doctor specify the make and model of the CPAP machine - exactly the one you want, do not leave it up to the DME. Second you want to be certain the DME has gotten preauthorization from the health insurance.

Then cross your fingers, it runs anywhere from taking it home from your followup to a couple weeks (or longer). If your AHI is 127, I expect the doctor will want to expedite it.
I am not a Medical professional and I don't play one on the internet.
Started CPAP Therapy April 5, 2016
I'd Rather Be Sleeping
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#3
Hey Izzybee,

"I'm 37, and I'm going to spend the rest of my life hooked up to a machine?"

I'm an embedded software engineer and while I don't work in the medical field, I feel pretty confident in saying that given Moore's Law, we will not be hooked up to machines for the rest of our lives. Advancements in biotech and bionetic technology will eventually replace xPAP and we will see it happen in our lifetimes (I'm 42 myself). Just think about it... the smart phone in your pocket is many orders of magnitude more powerful than supercomputers that used to fill entire rooms and cost tens of millions of dollars. To put in perspective... the graphics processor alone in the iPhone 6s (which fits in your pocket) is capable of more floating point operations per second than the Fujitsu Numerical Wind Tunnel, a supercomputer operated in Tokyo, Japan in 1994. Here's a photo (in this article) of just a small PART of it... the thing filled ROOMS:

http://blog.sfgate.com/techchron/2008/09...ry-museum/

... So... your basic current iPhone 22 years ago would have been considered one of the world's top supercomputers, affordable only by governments and major research institutions. Now everyone's telephone is capable of what used to require a supercomputer AND you can play Angry Birds on it! It fits in your pocket! I've not done the calculations for this but... I'm willing to bet that a SINGLE iPhone 6s easily has more processing power than all of the computers combined that existed in the United States (at least in the commercial sector, who knows what the government had) at the time we put the first person on the Moon in 1969. Speaking of which, the microprocessor in a ResMed Airsense is easily more powerful than the computer on the Lunar Lander (and we kind of have the space race to thank for that... A LOT of advancements were made in a short period of time as a result, the private sector has since taken over as the driving force).

So, technology is moving along quite rapidly. How long will it take? My best guess would be 25 years +/- 5. That might seem like a long time but... as medical technology advances... 30 is the new 20, 40 is the new 20, 50 is the new 20, etc. So I'm quite optimistic that it won't be forever. How it manifests? Who knows... most likely it will be a technology that most of us can't even imagine for curing OSA. As far as CSA... actually, they are already using implants to help treat central apnea so some of this stuff is happening RIGHT NOW!:

http://www.everydayhealth.com/columns/er...s-promise/
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#4
(05-01-2016, 08:00 PM)Izzybee Wrote: So I had the titration study, and apart from having my mask switched out a ton of times, I slept great.

How did some of you overcome the "oh my god I need a machine to breathe for me at night and it will never be normal again" feeling? I can't be the only one who has this?

Welcome IzzyBee!

I think that getting a safe and restful night's sleep will become the new "normal" for you and you'll come to appreciate the machine for what it's done to improve your life.

That's how I see it. I think I would be dead by now without cpap. I'm just thankful that I finally sought help.

On waiting for the machine; you really just need to tough it out and hope for the best.

When you see your doc; tell him/her you want a script for the most advanced and versatile machine you can get that is appropriate for your case.

That probably means a ResMed or Philips-Respironics brand. It needs to be an APAP rather than an fixed pressure CPAP. The APAP can be set to a fixed pressure and provides for future versatility. It needs to have data logging capabilities that the less advanced models don't have. You need a heated humidifier and heated hose.

Two units that most users have success with are:

1.) ResMed AirSense 10 AUTOSET (with add-on heated hose, it already includes a heated humidifier)

2.) Philips-Respironics DreamStation Auto (with add-on heated humidifier and add-on heated hose).


If you need a BiPAP or ASV that's beyond my experience.

Please don't be offended by the boldness of my comments, but I'm just trying help you in a clear and concise manner.

Also, if you end up with a different machine for some reason, you can always change it later if you need to.

Good luck and please post how things go.





Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
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#5
Izzybee,
Welcome to Apnea Board!
The first thing you may want to do is check with your insurance to see if you have a deductable, and how much you may have to pay. DME's are notorious for giving incorrect information.

DME's may try to pawn off what we call a "brick" ( a machine that collects no usefull data.)
Just know that your insurance pays the same for a Cpap or an Auto Cpap, so a DME will make more profit by giving you a Cpap.

Be sure your doctor writes a script for a fully data capable Auto Cpap, and ask for a copy of the script.

Here is a link to guide you in selecting a machine, and which ones to avoid.
http://www.apneaboard.com/wiki/index.php...ne_Choices

Arm yourself with knowledge before you see a DME.

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#6
Wow, thank you all for your replies. Going in armed with what to ask for helps hugely, sdb7802 and Franknichols. Opal rose, I'm pretty lucky in that I work for a major hospital, have their "gold tier" insurance (mainly because my daughter and I are severely accident prone!) and get extra discounts for going with drs who are a part of the hospital. I've checked my DME and it basically says "get prior auth for anything over $2000" so I'm expecting to need prior auth, but not too much trouble otherwise.

I was a little worried when they called me and moved up my titration study by over a week, but then they left my follow up at weeks out. I'm tired of nodding out here and there. My work are being great about it (hospital) but I get so worried when I commute, and I just can't feel safe going to sleep at night anymore. I guess ignorance really is bliss.

Shewhorn, I like your attitude. I guess I feel that DME often moves so much slower than regular technology (I'm asthmatic and still have the worlds biggest, loudest nebulizer). I shall stay hopeful for some advancement, after all, it seems I'm not alone in having sleep apnea! One good thing my technician told me was that when my asthma was acting up, the cpap would actually help a little.

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#7
Please keep in mind that the fundamental problem in SA is the collapse of the airway as you relax during sleep, which results in the inability to breathe and subsequent oxygen starvation of the organs and multiple arousal episodes. No amount of processing power can change that. Any treatment must address this basic symptom. I've only been under treatment for about 1.5 years, but to me the technology of the machines seems pretty mature. Mine is dead quiet and the level of humidification is perfect for me. I understand the frustration you must feel believing you may be stuck wearing a mask hooked to a machine for life, but that's not necessarily the case. For now it is probably the most appropriate solution given your numbers. As awareness of OSA becomes more widespread, research will undoubtedly accelerate, and you may indeed become mask-free sooner than you may believe. In the meantime, please continue with your xPAP therapy, and, as noted by others, don't let the DME give you a non-data-compatible machine.
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#8
Hi Izzybee,
WELCOME! to the forum.!
I wish you much success as you start your CPAP journey.
Hang in there for more responses to your post.
trish6hundred
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#9
(05-01-2016, 08:00 PM)Izzybee Wrote: I had an AHI of 127 and my O2 levels went down to 45%

Also, I'm facing some, I guess sadness mixed in with the excitement of actually getting some sleep. I'm 37, and I'm going to spend the rest of my life hooked up to a machine? Where will those leisurely sleep in mornings go? Nights out when you fall asleep on the couch and never even get to bed? Ummm, romantic stuff with the husband?

How did some of you overcome the "oh my god I need a machine to breathe for me at night and it will never be normal again" feeling? I can't be the only one who has this?

Dang! Those are some, um, impressive numbers. Geez...

My feeling of "I'm going to spend the rest of my life hooked up to a machine" changed to "I get to feel like this every morning? Awesome!" after my first good night's sleep. Mostly I just don't think about it. I have to brush my teeth everyday. Twice! And shower and comb my hair. And put a mask on when I sleep. It is just one more thing.

I still enjoy a leisurely morning in bed, I actually have come to find the mask and machine comforting. Falling asleep on the couch after a night out? My guess is the first time you do that after getting used to CPAP you will really regret it and not do it again. Right now, you won't feel much worse in the morning. After you get used to a good night's sleep it will seem much more painful. This I know. As for romantic stuff with the husband, just slip the mask on later when you are ready to sleep. Or when you wake up again. Big Grin
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#10
Tomorrow, call your insurance company to find out coverage. Then call the DME and ask how quickly you can get a machine. Now that you know how bad your situation is, you want a machine right away.

Make sure you know which machine you want so that the doctor puts it into the script. Mine put down Resmed Auto for Her, Heated Hose, Mask of patient choice because I went in knowing what I wanted. Unfortunately, I knew in advance that they had to order the Resmed machine. But, you might be fine with the Respironics machine - and they probably stock it.

Honestly, with your level of apnea, EITHER machine should work for you well. Just make sure that the doc puts AUTO on that script to get a top-of-the-line machine with all the data. Don't settle for a 'cpap' because while you may start off with one pressure, most of us do better with a range as well as enjoy the comfort features.

Yes, do get the heated hose feature. You may not need it, but the Respironics needs a different power supply and top for a heated hose. You can always go back to a standard non-heated if you want. The brand name hoses are much better and often, the only way to get it is with the heated hose since they can't substitute.

As to always needing the machine, after using it for awhile, you may be able to go the occasionally one night without the machine once your body is used to the idea that it isn't being choked all night long. I have used mine every night, but unless I'm using it 5-6 hours, I get headaches again.
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