Hi. Newly diagnosed, confused, have questions.

[OChit]

I'm so glad to have found this forum. I just got the results from my sleep study, and the results are Severe Sleep Apnea. I'm still trying to figure out all the proper terms, but all I know is that the nurse that called said I had an average of 37.7 events per hour. I have to go back for another sleep study to get me set up with a cpap machine.

A little bit of recent history leading up to this. I'm 50 years old, and morbidly obese (ugh..I hate that term). I weigh about double what I should. I was diagnosed with pneumonia a couple months ago. While being treated for pneumonia, I found out that my oxygen was running low (upper 80's). I got myself a little oxygen tester, and became a little obsessive about checking it, even in the middle of the night. After a few days I realized that it seemed to drop significantly when I was sleeping. Told my dr and he ordered an overnight oximetry study. That showed that my level was dropping into the 60's at night. Since then I have had to use oxygen at night. My daytime level is still a bit low (between 93 and 95). Dr ordered a Sleep Study because I complain of always being fatigued, heavy snoring, etc. I was pretty confident I didn't have Sleep Apnea, because I feel like I sleep GREAT. I don't wake up choking or gasping for air like many describe. I don't wake myself up with my snoring. I am out like a light. So much so that I could literally sleep for 14 hours or more a day if I didn't have to work and take care of my family. But no matter how long I sleep, I still wake up exhausted. The dr has me scheduled for an echocardiogram next week to be sure that my heart doesn't have anything to do with the low oxygen and severe ankle and foot swelling I am also experiencing.

To be honest, I am really worried about the cost of all of this. I have health insurance, but with a $3K deductible. I haven't gotten the bill for he sleep study yet, but it researched it and it seems that it will probably be around $1K. So actually $2K since I will have two studies. I already pay $105 per month for the oxygen concentrator. I don't know if I will still need the oxygen after I get the cpap machine or not. Does anyone else have experience with this? I asked the medical supply company that supplies the oxygen how much the cpap machine will cost and she said around $170 per month for 10 months, then I will own it. Does this sound right? I really don't have that kind of money, especially if I have to stay on the oxygen. We live paycheck to paycheck, like many families. Do I need to shop around? My husband was diagnosed about ten years ago, and used his machine for a couple months and gave up on it. We still have his machine. It's a Respironics Remstar Pro M Series. Is there any chance that I would be able to use that, instead of purchasing a new one? Also I have read posts here about analyzing the data, running reports, etc. Is that something I will have to do, or who does it? I'm overwhelmed at the thought of everything. If I do have to get a new machine, I want to be sure I get a good one, not just whatever they decide to give me. And the hoses, masks, headgear, etc......!!!!! I don't know where to start.

Please, if anyone has had similar experiences with low oxygen,etc., I would love to know if the cpap helped that. Also any advice about how to choose the machine, or if I can use my husband's old machine, if those price quotes seem right, any info will be helpful.

Thanks so much for any information and I look forward to being part of your community.

[Sheriff Buford]

Welcomed! You are in the right spot! Lots of questions. Shop around. You can get a data capable machine, a Resmed Air Sense at our host (cpap.com) for 883 dollars. It's top of the line. I was like you. I would sleep 10-12 hours and still fall asleep at a light. I was not getting the "good" sleep - All the sleep stages. With proper therapy, if i get 5 hours, I can make it. With 6 or 7 hours,
i feel great! Sleep apnea causes the oxygen levels to dip, so again, proper therapy should bring it etup to a safe level. But make sure. All indications point to you having sleep apnea.

Good luck, Sheriff

[palerider]

I was pretty confident I didn't have Sleep Apnea, because I feel like I sleep GREAT. I don't wake up choking or gasping for air like many describe. I don't wake myself up with my snoring. I am out like a light. So much so that I could literally sleep for 14 hours or more a day

classic symptoms, however, you weren't sleeping great, you were passing out from exhaustion. most people who snore don't think they snore, because they're not awake when they're doing it.

To be honest, I am really worried about the cost of all of this. I have health insurance, but with a $3K deductible. I haven't gotten the bill for he sleep study yet, but it researched it and it seems that it will probably be around $1K. So actually $2K since I will have two studies. I already pay $105 per month for the oxygen concentrator. I don't know if I will still need the oxygen after I get the cpap machine or not. Does anyone else have experience with this? I asked the medical supply company that supplies the oxygen how much the cpap machine will cost and she said around $170 per month for 10 months,

you can *buy* an oxygen concentrator for less than a few months of rent.

and you can buy a great machine, second hand, for a fraction of what that quoted price.

[zoocrewphoto]

I was pretty confident I didn't have Sleep Apnea, because I feel like I sleep GREAT. I don't wake up choking or gasping for air like many describe. I don't wake myself up with my snoring. I am out like a light. So much so that I could literally sleep for 14 hours or more a day

classic symptoms, however, you weren't sleeping great, you were passing out from exhaustion. most people who snore don't think they snore, because they're not awake when they're doing it.

So true. I knew I snored since I sometimes woke myself up. But my memory of a typical night was waking up 4-5 times a night. My sleep study had 271 events in 2 1/2 hours with an ahi of 79. And I never reached deep sleep or REM during that time. My sleep was terrible, and I really had no idea how bad it was. Sleep apnea creeps up on you, gets worse slowly over time so that you don't realize how bad it is. When I did my sleep study, the tech put the mask on, and I rolled over and slept over 5 hours straight. I had not done that in years. It was amazing. And I felt good the next day. I finally knew what a good night of sleep was supposed to feel like.

To be honest, I am really worried about the cost of all of this. I have health insurance, but with a $3K deductible. I haven't gotten the bill for he sleep study yet, but it researched it and it seems that it will probably be around $1K. So actually $2K since I will have two studies. I already pay $105 per month for the oxygen concentrator. I don't know if I will still need the oxygen after I get the cpap machine or not. Does anyone else have experience with this? I asked the medical supply company that supplies the oxygen how much the cpap machine will cost and she said around $170 per month for 10 months,

you can *buy* an oxygen concentrator for less than a few months of rent.

and you can buy a great machine, second hand, for a fraction of what that quoted price.

Check with your insurance, find out what it will really cost you. Do not depend on what the DME tells you. It could be that they charge $170 a month, but you pay a small portion. Or they could plan to stick you with that much. So make sure you know what the insurance company plans to do. Also make sure you know what machines you are okay with. You want a full data machine. If you have any trouble at all, you will need the data to know what to work on and what adjustments to make.

Also, if you don't don't mind used, there are some sellers on this list as well as local Craigslist where you can get some good deals if you know what you want and what price is good.
I bought a backup Resmed S9 autoset for $200 via craigslist. That was pretty good deal. I usually see a couple per month in my area for $300 or less. And several that are way overpriced.

[Pugsy]

The Respironics M Series Pro cpap machine that is in the closet can be used.
It is a full data machine but the data is not as comprehensive as the newer models but it can be used unless some unusual circumstances are discovered during the sleep study where they determine the pressures needed.

[OChit]

Thanks so much for the advice and words of encouragement. I'm still confused as to what a "full data" machine is. I'm assuming it keeps track of hours of sleep, and maybe some of the stuff the sleep study tracked? But how is that information extracted from the machine? Is that something I would do myself, or would I take it somewhere? I'm not very computer literate, and it sounds confusing. Lol.

[palerider]

Thanks so much for the advice and words of encouragement. I'm still confused as to what a "full data" machine is. I'm assuming it keeps track of hours of sleep, and maybe some of the stuff the sleep study tracked? But how is that information extracted from the machine? Is that something I would do myself, or would I take it somewhere? I'm not very computer literate, and it sounds confusing. Lol.

well, these days, full data gets you this, and more information: (click for biggerness)


it can tell you a lot of what's going on, how you're breathing, how your night was, ..... how well you're being treated. it's *essential* unless you just want to make guesses about how well it's working.

it's extracted from the machine, typically via SD card, though some use a usb stick.

it's something you can easily do yourself, most of us do it.

[robysue]

Thanks so much for the advice and words of encouragement. I'm still confused as to what a "full data" machine is.

A full data machine detects and records the number and type of events that get by the CPAP defenses---i.e. you get a report of what your treated AHI is. Tracking your AHI lets you know whether your CPAP is effectively treating your apnea.

Full data machines also record leak data. Every mask has an intentional leak built in to its design so that you don't rebreathe your own CO2. But unintentional leaks (which can be caused by a number of different things) can be both bothersome to your sleep and detrimental to the effectiveness of the CPAP therapy itself. Having leak data available allows you determine whether or not your leaks are enough of an issue to worry about.