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Obstructive Sleep Apnea (Osa) Info Requested?


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  • HadIt.com Elder

I'm looking for others to post their experience with the VA's handling of their OSA care. I was diagnosed 2 yrs ago. The VA gave me a CPAP. I was eventually able to adapt to a nose pillow type facial apparatus. Took about a yr. Since then they've given me a new machine but I'm still having problems w/it. Last wk I had a private OSA specialist order me a new sleep study. I believe I will be switched to a BPAP shortly, which should help. Part of my problem is that the VA never set my new machine to my specs but just left the factory specs set for me. Needless to say I'm still having problems. My private Dr reset the CPAP for me, which helped, but will probably need the BPAP. Part of my problem is getting the VA to replace my nasal pillows?? My VA does absolutely no follow-up. Anyone caring to add their experience, it would be appreciated, so please do. Thanks!

pr

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The Va provided me with a CPAP.The first year I was seen by the specialty clinic at the OKC Veterans Hospital about every 3 months.After that I haven't seen or talked to a live person about my Apnea in almost 18 months.About 6 months ago they sent an envelope for me to download my chip from the CPAP and a questionaire.I had not used the CPAP for over 6 months as I CANNOT go to sleep with it on.I put this in the questionaire.Never recieved any feedback until about 3 months later when my Psychiatrist saw a note in my medical treatment records.Still not using CPAP as I currently have enough issues going to sleep as it is.I am taking Trazadone at night to help me sleep and as 1 of my antidepressants.I am really not pleased with the VA's treatment of this issue..Good luck with the new machine...............Grid

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  • Content Curator/HadIt.com Elder

I can share my experiences with the VA and private medical. The VA did a sleep study a few years back that didn't find anything significant. Over the past year, I was seen by a non-VA rheumatologist who went over everything and requested a second study. A few months ago I had the study. It was positive for OSA and also had neurological readings consistent with fibromyalgia. I came in for a second study the very next night and they got me on a BIPAP. They had to get my numbers well above 20 for it to make a difference with the fibro, which is a problem in itself (will explain in a bit).

My private insurance did provide me with a really nice BIPAP machine, complete with remote monitoring so the sleep clinic can make adjustments without me having to bring in the unit. Not sure what the VA would have provided.

Having pressure numbers above 20 means the mask almost has to be bolted to my head to prevent air leaks that make fart-like noises all night long. The tension from the straps sends my TMJ pain through the roof, even penetrating any sleep or pain medicine I may have taken. Waking up in the morning is now a mixed bag, never knowing if I will feel even partially refreshed or in horrible pain. It's better than before though, because it was just all pain.

My insurance only provides replacement parts roughly about every 10 months, but I had to get a replacement mask because the thin silicone/plastic film got torn while I was hospitalized recently. Luckily, the vendor had a spare and swapped it out no problem. If it happens again before the 10 month window, it will cost me like $75 for a replacement.

I actually have a VA primary care visit coming up soon and was going to inquire about having the VA sleep clinic supply replacement hoses and mask/cusions. I didn't have high hopes for them to say yes, but after reading about your experiences I at least expect them to be less cooperative.

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I received a CPAP from the VA in 04. Once I received the machine I went several years without being seen by the VA. I had other health issues going on so I didn't think about it. Finally they sent me an appointment which I went to. I was told I should be seen yearly. I don't know who dropped the ball. Anyhow I go yearly now. They furnish me with whatever supplies I need.

vet12

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I must be one of the lucky ones. Just DX'd with OSA in Aug. of this year. The first week in Sept. I was given a BiPAP by my VAMC. (Priced it on the net. Just under 6 grand.) They set it at 8/4 and made me an appt with a pulmonologist.

After the appt, went back and they reset the machine to 10/6. They made me an appt for 6 months out and said if I needed parts in the interim, to walk in and they would supply them. As for the BiPAP, it's totally silent. And I can now stay awake instead of falling asleep in the middle of my first cup of coffee. Just can't find anything bad to say about the treatment I've received from my VAMC.

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Johnjr, just a heads up.For the first year they seem to be pretty good about it>then you are SUPPOSED to be seen at a minimum of once a year.I found that after the first year they tend to more or less forget about you.When they last contacted me about my OSA they sent me a card to download and a questionaire...Hopefully your situation will go different.maybe you are one of the lucky ones..Good Luck.....Grid

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PR

I have been on a CPAP for about 3 years. It is instructive, I think, how it happened. For 12 years, I have been treated by the local VAMC. About 3.5 years ago, I experienced chest pains. My wife called the VA to let them know I was coming in with chest pains. The VA said, "We are full, and diverting patients." My wife responded "diverting to which hospital". They responded a hospital of the Vets choice.

So, my wife took me to Dayton Heart Hospital, where she worked for 10 years. In 24 hours, DHH had diagnosed my sleep apnea, and recommended a sleep study.

I took this recommendation to the VA, after getting out of the private hospital. The VA sleep center concurred with the DHH, after doing a sleep study, and diagnosed me with OSA.

A CPAP was prescribed. While it did take some getting used to and some "tweaking", the CPAP is no less than a lifesaver for me. As the DHH heart surgeon explained, the right side of my heart was enlarged due to not enough oxygen at night. (The heart gets bigger to compensate for not enough oxygen). This expanse of the right side of the heart continues, until the heart is "lop sided" and develops arrythmia's, and, ultimately CHF and death. By treating the sleep apnea, it saved my life.

We have a sleep doc here at my VAMC. He knows what he is doing, but has way, way, too many patients, as is often the case with VA docs. Thus, no follow up. I have to contact him if I want follow up.

I made an appointment once and he "tweaked" my CPAP. You see, the air pressure is variable, and you want the minimum pressure possible that still keeps your airways open. There is no need for excessive pressure. During the sleep study they gradually increased the air pressure until I had no more apnea events.

However, your sleep apnea is not necessarily static. For example, you can gain weight and the extra tissue in your throat may mean the pressure has to be increased to accomodate the extra tissue. So, if you think the CPAP is not working correctly, go to your sleep doc and tell him, and explain your symptoms, and why you think the CPAP is less than fully effective. My sleep doc increased the pressure from 9 to 10 pounds, and, while that does not seem like much, it was enough, and I sleep pretty well.

I have gotten used to the CPAP and take it wherever I go. I never sleep without it.

Reggie White died from Sleep Apnea:

http://www.medpagetoday.com/PrimaryCare/SleepDisorders/298

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pr, I was issued a CPAP in Oct 2011, and have been using it faithfully since. At the time I got it, there were other Vets also, (about 10) and the tech took a couple hours to show us all about the machine, its operation, use, cleaning, where to call for parts, etc. Then we tried several masks, and chose the one we wanted. She explained that we could expect to receive an envelope in the mail asking for the "chip" that we were to send in, so they can analyze to be sure the machine is doing what each individual needs. (Also checks that it is being used.) She said to look for this envelope in about six months. I did not get the envelope on time, so I called and asked; they told me to send it right in. I got a call back from the tech lady that initially fit me and she apologized to me for not getting the notice out to me on time. I haven't had any problems with the machine at all, I get new pillows filters, etc when I go over to the hospital ( my VA is James Haley in Tampa,Fl). I still wake up tired, but what else is new?

Thank you for your service

Buddy

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  • HadIt.com Elder

Thanks to all who responded!!! I sincerely appreciate it. It appears VA services, for OSA, rate from very poor to really great, depending on which VAMC you deal with. I use my CPAP faithfully, every night, but still wake up 4-5 times, nightly. I hope to resolve this when I get a chin strap and a BiPAP. Only time will tell. I'm currently trying to run it thru my Medicare, as replacement masks will be more frequent with them, than w/VA. The VA would just as soon never update the disposables, for cost savings reasons.

Thanks to all your feedback I'll be pressuring my VA for better service! Thanks again!!!

pr

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  • HadIt.com Elder

OK, had a new sleep study and they'll be putting me on a BiPAP, which I'll be going thru Medicare and my Medicare co-ins for. Has anyone any dealings w/Lincare or Apria medical services, either good or bad?? They appear to both service my area in NC and in VT, when I'm home, but I don't have any experience w/either. Any assistance would be appreciated. Thanks again!

pr

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Well, I had my annual CPAP appointment today. Last year they told me I had missed 25 nights of using it and that I only used it for 4 hours a night. I didn't agree but said nothing. I faithfully used it every night since for at least 7 hours. I have a claim in for it so you know I will do whatever it takes.

So today I asked about usage of the CPAP. She showed me the report that I only used it 4 hours per night and that I didn't use it for 344 night within the last year. I was furious. I said her program was wrong. She said nothing was wrong with the program. I said then the CPAP is wrong then she said the CPAP was fine. So I said then you are saying I lied. She said yes. I asked for her name which she didn't like and said to go ahead and complain about her. I assured her I would.

I asked for another CPAP because it was wrong. She said I could get one next year. I said and you will get the same results too.

I was told that I have severe sleep Apnea and I'm supposed to trust this machine.

I just sent my Senator an email. They have helped me twice before.

I hope you all have better luck with your CPAP.

vet12

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It does write the data directly to the smart card. We never had a problem with ours but maybe demons did something.

Well, I had my annual CPAP appointment today. Last year they told me I had missed 25 nights of using it and that I only used it for 4 hours a night. I didn't agree but said nothing. I faithfully used it every night since for at least 7 hours. I have a claim in for it so you know I will do whatever it takes.

So today I asked about usage of the CPAP. She showed me the report that I only used it 4 hours per night and that I didn't use it for 344 night within the last year. I was furious. I said her program was wrong. She said nothing was wrong with the program. I said then the CPAP is wrong then she said the CPAP was fine. So I said then you are saying I lied. She said yes. I asked for her name which she didn't like and said to go ahead and complain about her. I assured her I would.

I asked for another CPAP because it was wrong. She said I could get one next year. I said and you will get the same results too.

I was told that I have severe sleep Apnea and I'm supposed to trust this machine.

I just sent my Senator an email. They have helped me twice before.

I hope you all have better luck with your CPAP.

vet12

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PR,

My wife and I have Apria and American Home Patient and had problems with both which I now believe now every durable medical equipment provider does the same thing.

Numerous billing issues..............then they Apria recharged us for full payments two years later. AHP made double accounts and wouldn't consoldate them and after going through our records with AHP after you carry a credit for 2 months they took the credit and put it to a ZERO balance.

Needless to say we are still looking for someone to use for a DME. I would say it is a local office matter but with AHP I contacted their HQ and they had no clue of where our prepaid account balances where going.

Mistakes we made were by paying ahead of time and paying more than the min.

OK, had a new sleep study and they'll be putting me on a BiPAP, which I'll be going thru Medicare and my Medicare co-ins for. Has anyone any dealings w/Lincare or Apria medical services, either good or bad?? They appear to both service my area in NC and in VT, when I'm home, but I don't have any experience w/either. Any assistance would be appreciated. Thanks again!

pr

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Just an update. I received a call from the VA this morning and I will be getting a new machine. I knew the report was incorrect because I had not missed a night of using it.

vet12

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  • HadIt.com Elder

Here's an update: I received a new BiPAP machine, thru Medicare, which is set at 21 for inhalation and 14 for exhalation. I've been using the machine for eight nights, faithfully, but I'm still waking up 5-7 times over the course of the evening. I usually wear the machine between 9-11 hrs. Any thoughts as to why I might be waking??? Thanks to any who respond. I'm using Lincare, Inc. , a national company.

pr

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  • HadIt.com Elder

Phil

If you stop breathing does this machine breath for you? Some do and some don't. I have the wake-up problems as well. Often I wake up very dry even though I have humidifier. The seal on your machine may be breaking thus causing famous farting noise or high pitched scream. Do you have to piss often? Do you nap in day time?

John

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  • Content Curator/HadIt.com Elder

Here's an update: I received a new BiPAP machine, thru Medicare, which is set at 21 for inhalation and 14 for exhalation. I've been using the machine for eight nights, faithfully, but I'm still waking up 5-7 times over the course of the evening. I usually wear the machine between 9-11 hrs. Any thoughts as to why I might be waking??? Thanks to any who respond. I'm using Lincare, Inc. , a national company.

pr

Phil,

I had the same problem with mine. I followed up with the provider and they said it tends to happen when people are switched to the higher BIPAP pressures, but sometimes clear up after a couple of weeks. They also gave me a silicone strip to put across my nose. The mask was rubbing the bridge of my nose raw, making it more uncomfortable than it is normally.

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  • HadIt.com Elder

Phil

If you stop breathing does this machine breath for you? Some do and some don't. I have the wake-up problems as well. Often I wake up very dry even though I have humidifier. The seal on your machine may be breaking thus causing famous farting noise or high pitched scream. Do you have to piss often? Do you nap in day time?

John

Sorry I missed this earlier, John. Prior to my OSA diagnosis, I would awaken about every 2hrs thinking I'm getting old and my bladder is starting to fail, so I would get up and pee. Once I had the sleep study they realized the problem and now I don't bother to pee, every time I awaken. Since I've started the machines I've had 4-5 nights where I've only awakened once or twice and that's over a period of a yr and a half. I rarely nap during the day, maybe a dozen times over the past yr.

No machine can breathe for you, unless it's a respirator, as the air will fill the stomach once the epiglottis relaxes. I'm doing better but was lead to believe my sleep would improve greatly, which I don't think it has. jmo

pr

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  • HadIt.com Elder

Phil,

I had the same problem with mine. I followed up with the provider and they said it tends to happen when people are switched to the higher BIPAP pressures, but sometimes clear up after a couple of weeks. They also gave me a silicone strip to put across my nose. The mask was rubbing the bridge of my nose raw, making it more uncomfortable than it is normally.

Vync - thanks! I'm still adapting. I just tried switching to a full mask but am having trouble w/that, as when she set me up w/it, she checked the seal at 11 lbs pressure (which worked at the office) but my pressure is 21 lbs so of course it leaked at home. I had to tighten it down so much it became unbearable. Now I'm back to the nasal pillow. I just need to get used to a chin strap.

pr

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