Questions about my condition/equipment to buy PLEASE HELP!!

Hello everyone, I am new here so please forgive me if I unintentionally do something wrong. I am a Severe OSA sufferer that is currently without a machine for therapy.

I have Severe OSA, according to a sleep study from last year, and from what I remember the DR said I was her worst case. I was prescribed a Resmed Aircurve 10 Bipap, and sent on my way with periodic follow ups. The doctor I had, in my eyes, was not very good. She was condescending if I ever had questions about my treatment and not sympathetic when I would tell her issues I would encounter using the BiPAP. My IPAP and EPAP settings were set to 15 and 10.

I lost my job last September 2016 and lost my insurance a month after, and for some reason Apria reset the cost of the BiPAP to own when the insurance informed them (it was a rent to own plan) which would have cost me $2500 out of pocket. I couldn't afford this and have gone without it. I have Kaiser Permanente (Southern California) insurance now, but apparently the plan I thought I had selected because it was good coverage, turns out doesn't cover DME expenses at all without a 3rd party (how it was explained to me). So now I am back where I started and have to buy a device out of pocket. To top it off the Kaiser sleep dept won't schedule me an appointment until I get my own device, because I provided the sleep study from last year from the other dr. They won't even meet with me to discuss issues I was having with the BiPAP. :thinking-about:

That's why I'm here, I've read up on the differences of Bipap, Bipap ST, VPAP, ASV, and I'm even more confused than before! Hoping to get some answers here on an optimal device to purchase. One thing to note is I have unopened bags with replacement parts from my old ResMed AirCurve 10 Bipap, I have Climateline air tube, AirFit f10 mask (without head fitting straps), two replacement hard plastic mask parts (with rubbery outer seal) and some white filters for the Aircurve. Apria took my old mask, straps, and hose tubes when I had to return the old machine. I am leaning towards another AirCurve but I really want to avoid spending $2k+ for a new machine that will last me for the next decade or however long I need it. I am willing to try something from the previous models (S9, etc) if I can save a lot of money. I'm unemployed right now.

First some issues I noticed: I would frequently wake up in the middle of the night or morning with my mask off. For some reason I was taking my mask off at night in my sleep, and my doctor at the time must have thought I was lying because she never told me why. A few times, I have woken up out of sleep and furiously pulled my mask off because I felt like I couldn't breathe, which scared me because I thought using the device was supposed to prevent that! I would pull it off and recover my breath, breathing hard, then reluctantly put the mask back on. I also had difficulty falling asleep using the BiPAP, unless I was very very tired. I could never fully relax because the machine would exhale before I'd naturally finish inhaling, and inhale before I naturally finished exhaling. I also can't yawn with it on, which is a habit I have before falling asleep. Also, almost every single night for the past two years I for some reason wake up sitting up on the edge of my bed (mask off when I had the BiPAP). Family have often seen me this way, woken me up and had me lay back down only to wake up like that again. My doctor again couldn't explain any of this, just saying it is a sign of advanced sleep apnea and often ASKING ME what I thought?! I came to her desperate for answers and always left with more questions. Also, I felt like I never had the quality of good sleep that I did the night of the sleep study, which really confuses me. Nothing the Dr did (or didn't do) seemed to help, which really discouraged me from seeing her (cost me 50 bucks to see her just to leave unsatisfied)

So.. Should I buy an older generation BiPAP or a current generation since I have some replacement parts (which I understand are pretty pricey without insurance)? Should I buy a regular BiPAP, a BiPAP ST, or ASV? I am trying to stay with either Respironics or Resmed because Kaiser says they only read info off of those two brands. I want something that will last a long time and if my condition worsens or I somehow develop CSA also, my machine can handle it without having to buy a whole new machine later. I'm leaning toward the BIPAP ST, for the spontaneous timed breaths, because I feel I wasn't getting enough air or maybe forgot to breathe with my old BIPAP? Only thing is I think AirCurve ST is around $2300, way out of my price range unfortunately.

I am open to all suggestions, sorry for such a long post, I just wanted to include as much detail as possible for the best possible responses. I am still a newbie to all of this.. Thank you everyone and I'm glad I am not alone in all this!

Check out secondwind.com. They have "gently used" machines at a great price. I haven't used them, but many forum members have and they are reliable. I'm about to use them to buy a backup machine. $2000 is a joke and that's what insurance pays for the machine. Educate yourself here... we will help you.

By the way... sorry about the Chargers moving. In Houston, we lost the Oilers and it ain't no fun not having a team. I wasn't following ya'll's story close, but if it was for a stadium... hold your nose and vote for it! Taxpayers shouldn't have to pay for a stadium... but we gotta have football!

Sheriff

Thanks Sheriff! Where should I look to educate myself on what I should be paying for a BiPAP ST? I believe that is the machine I previously had. Also, is ASV a better option if my condition ever worsens, or just better overall? I'm just trying to avoid paying too much, but also not skimping on a good product.

On the Chargers topic: A lot of San Diego is heartbroken to see they left to LA. Most believe it is simply the will of Dean Spanos, but our home game attendance was low too. Hard to get behind a losing team, but even then we still have tons of diehard fans that get disappointed every year. I voted YES for both options to keep them in SD, unfortunately the ballot showed majority voting no. Some controversy though, locals reported they didn't get to vote on the issue, and the vote may have been restricted just to the geographical boundaries of San DIego City, and not the entire San DIego County. All in all, I just hope another team comes down to San Diego!

Without out commenting on specifically what your need, or might need in the future, check out the Sheriff's suggestion, Secondwind CPAP http://www.secondwindcpap.com/Used_CPAP.html They offer used machines with a warranty.

To save money, I suggest you consider the older S9 rather than the newer Aircurve. They are basically the same machine with different covers. An S9 should be considerably cheaper, but compare the two. Unfortunately, filters and hoses may not be interchangeable between the two, but all masks and things to do with masks are.

I will say that it is relatively rare that one needs a machine more complex than a Vauto (Resmed's auto bilevel), and even the need for a bilevel is somewhat rare. A diagnosis of "Severe Apnea" means little as far as machines go. Severe apnea could be managed in many cases with a basic CPAP. Without seeing the results of your sleep study or other reports such as those from SleepyHead or Rescan, I don't think anyone would be able to say what you might need now or in the future. It's quite possible that the problems you were having were simply from improper machine settings or difficulty adjusting to the therapy, rather than with the machine itself. Taking the mask off in the night and feeling unable to breathe are relatively common problems while learning to adapt to the therapy.

Thank you for your response Jay.

I do have access to my sleep study information. Would posting it up on here provide me with any more information I could use? Also, I opted to try the BiPAP because I was originally diagnosed as a teenager with having Severe OSA, and was prescribed a CPAP that I could not tolerate and inevitably stopped using. Last year was my first year with insurance in a few years so I decided I would ask the doctor about BiPAP therapy, and the sleep study performed on me used a BiPAP at the end of the study, which significantly reduced my episodes. Also the AHI showed as 126 for me, and the Dr saying having 30+ was considered Severe.

Is it entirely possible I am overthinking what I have and that you are right that I should just go with a normal or auto bipap rather than an ST. But I am just looking for confirmation so I do not end up purchasing more than one machine in the foreseeable future.

If posting my sleep study results on the forum helps, I will do so in hopes of seeking out more accurate information to my condition. Thank you again Jay!

Jioaa1988 wrote: I have Kaiser Permanente (Southern California) insurance now, but apparently the plan I thought I had selected because it was good coverage, turns out doesn't cover DME expenses at all without a 3rd party (how it was explained to me).

jioaa,
Do you know exactly what they meant by not covering expenses without a 3rd. party?[/quote]

Hello Klm!

No, I had trouble grasping the concept when the respiratory therapist was telling me over the phone. I learned elsewhere reading on these forums from user Janknitz that Kaiser single or group healthcare plans through ACA do not cover DME, and I am not the only one. However, the RT did mention 3rd party, but I still don't know how it would apply to me or if she made it up. She said something along the lines of a 3rd party (1st party being me, 2nd party kaiser, 3rd party an employer/job or some other entity paying towards the amount) needed to be present to grant DME through Kaiser, but that my plan doesn't cover CPAP/BiPAP equipment otherwise. I'm unemployed and purchased the plan through Covered CA, so I assumed it was a loss.

Unless you have a large number of central apneas along with obstructive sleep apnea or some other restrictive lung disease making it so that you actually have to have a machine do the breathing for you then I suggest you don't worry about ST or ASV bilevel machines.
Now the regular bilevel machines that just offer the potential differences in inhale and exhale pressures...yeah, especially with pressures in the teens.
Will your condition worsen later and maybe require these high end machines...dunno but it isn't all that common for things to worsen like that.

So what was the official diagnosis? Obstructive sleep apnea or something else?

Check your local Craig's List. You can often find machines listed there at a reasonable price. I would recommend the Resmed Air Curve 10 VAUTO if you can find it. Your current supplies will work with it.

Dear Sir: I just logged back on to this forum to ask the question of how can I tell how many hours a machine has on it when I without even trying to find a subject on this, but for some reason this post came on my screen. Don't ask me how that happened because I am an 82-year-old lady who is not very tech-savvy. I used to think that I was pretty sharp but not on these forum-type things. My dear husband had severe sleep apnea as well as a neurological disease which would cause him to have stoppages of his breathing. He passed away in October but it was not from the sleep apnea problems. I am not sure how long he used his BiPap machine and how many total hours he had on his machine. It is a ResMed AirCurve 10ST. I know that he used it for the required 11 or 12 months that Medicare required that it be rented from the company who furnished it and before he died we got a letter from them stating that it now belonged to us and that we could either donate or sell it. During that 11 or 12 month period of time, the supplier replaced the machine twice because of his excessive number of sleep disturbances per night, they thought the machine was not accurate. I don't know all the reasons behind their replacing it; perhaps it was a defective machine. For whatever reason though, the machine that I now have probably was used only 4 to 5 months and not more than 5 hours most times.

I also have 4 unopened Fisher & Paykel Simpluls full face masks as well as an additional tube that is unopened. I really don't know what the fair market value for all of these things are. If you are interested in any of the items, I would be glad to consider your offer. I would need for you to be able to pay for it through Paypal or through a money order before I could mail it to you. I also would like for you to pay the shipping charges. I am now a widow and my income has been drastically reduced since my husband's death.

Also the machine comes in a very nice carrying case. There are also 4 unopened filters for the machine. I look forward to hearing from you. I have been in touch with an on-line company that buys these machines but I am not sure how much they will offer me. That's why I am trying to determine how many hours the machine has been in use in actuality. I will wait until Monday to hear from you and otherwise I will proceed with the on-line company that buys the machines.

Sincerely,

Thanks for helping me out on how to find the hours of usage. It shows that it has been used 2045 hours. Is that a lot of hours? I am not familiar with the lifetime of this machine based on hours of usage. I checked the date when they brought out the replacement machine and we actually had it only about 4 months. So it possibly had been used when the medical company exchanged machines. I just don't know. If you would be interested in it, make me an offer as I need to get it into someone's hands who could benefit from it.