Resmed VPAP adapt SV for Central Sleep Apnea

[Karla1958]

Hi. I'm new here. I've been searching the internet trying to find someone to help me and I found this site. I just got done at the sleep clinic and they say I have Central Sleep Apnea and I need a ResMed VPAP adapt SV and I should get one asap. My problem is that I live in ALabama and am on SSI and ALabama Medicaid, which does not pay for any respiratory devices at all unless you are under 21. I am 50 years old. I don't have any money and I certainly don't have an extra $6000 for this machine. I'm wondering what other poor people do who have lame insurance that won't pay for the equipment they need. I wrote to ResMed and they said they don't donate equipment and I should apply at AwakeinAmerica.info or AwakeinAmerica.org (same place) but I had a friend call them (I'm too upset to talk to anyone right now) and they said they do not provide the VPAP adapt SV because it is too expensive. I saw online that the machine is between $5000 and $6000 and more even without any masks or extras. I don't know where to turn to try to get this machine. The local store that the sleep clinic faxed my prescription and sleep test results to called me and said that they don't even carry the machine because it's too expensive and they don't think anyone would need one. And they aren't willing to donate one or even get one for me to try. So, I'm going nuts here. I've slept since 2003 when the sleep doctors said that I just had idiopathic hypersomnia and there was nothing that I could do about it. Now, I find out there is something I can do but I can't afford it. Does anyone know of any organization that provides these machines for free or cheap? I guess I'm begging for help here. I hope there isn't a message board law that says that begging is not allowed. Begging is the only choice I have left, besides dying in my sleep or sleeping each and every day-about 18 hours a day. Does anyone have any ideas on what I should do? I'm so sick of sleeping. I can't drive because I'm not safe. I just sleep, even more than my cats do. Any ideas on what or where I can do for help would be greatly appreciated. Thank you.

Karla

[OutaSync]

Karla,
Keep you eye on cpapauction.com. Those units come up for auction sometimes for very reasonable prices. I got my $6500 Auto SV , brand new, for less than one third that price. There is one up for auction now:
http://www.cpapauction.com/browse/cpap- ... -_sv_.html

THis is the Respironics version of the adapt SV.

Another place you can look is craigslist.com. Every once in awhile I see one on there.

What kind of machine are you using now? Will your DME rent you one while you are looking for one to buy? Do you have a copy of your sleep study? Do you have a prescription yet?

Bev

[Karla1958]

I'm not using any machine now. I can't afford one. What is DME? I only have about $12 to my name and can't afford to buy or rent a machine of any cost. The sleep center sent my prescription and report to a CPAP store but they can't help me at all. They don't even have a machine like I need in their store and they think it's too costly to buy and rent(I couldn't afford to rent anyway.) Since Alabama Medicaid won't pay for ANY kind of CPAP BiPAP or VPAP, the store wouldn't deal with me at all and they are sending my prescription and report to me. The sleep clinic said that they don't know of any way I can get one. So, that's it... good medical advice. No kind of sympathy for the poor. Amazing. I even called the Alabama Governor's office and asked why they don't cover these things. They just said-Oh,well, too bad. They cover what they cover and don't cover what they don't.- Isn't it important to have this machine? I thought it was. All I do is sleep now. Way too much sleep. And I never wake up. I mean really wake up.

[OutaSync]

Karla,
A DME (Durable Medical Equipment provider) is a cpap store. Okay, so we aren't getting any help there. You need to get a copy of your complete sleep study , as well as your prescription. I'm wondering if all of your apneas are centrals or if most are obstructive and only some are centrals. Either way you would need some kind of CPAP machine, but maybe one not as expensive.
In the meantime, can you check your local craigslist and see if someone might have a free unit that they don't have any use for? I'll look around in my area.

Bev

[Karla1958]

I only have the Central sleep apnea. The sleep study people said it was only 27 "episodes" an hour. Doesn't seem like a lot to me. Maybe my cats will wake me up before I die in my sleep. They get me up enough during the night anyway. I just am so sick of sleeping all the time. I pass out (sleep) even in the middle of eating which is so messy and annoying and of course, always falling out when drinking something that stains like coke or grape juice! Before your machine did you fall asleep all the time? I only had one big car accident so far. But I try to get my roomie to drive me around now. It's so unsafe to drive or eat... and I'd love to take a bubble bath, but I'd know I'd drown in there! On the good side, my cats love that I sleep all the time. But it's gotten to the point where I sleep more then the cats. When I had this sleep study done in 2003 I only had 19 episodes and hour. Do you keep getting more and more "episodes" as you get older? My sleep clinic wasn't too nice about answering my questions. They kept saying that is for another doctor to answer. What other doctor could I see about this brain problem? And mine "falling out" just started out of the blue... is that the way it always starts? Or does it ease into existence for others? When I went in for my first sleep test they took an MRI because they thought I had MS at first, and they found a tumor (acoustic neuroma) on my left side. I was wondering if anyone else has had something else going on in their heads at the same time as the "episodes" starting. I also was on a strict diet and lost around 100 pounds in about 6 months. I wonder if maybe my strenuous dieting burnt out my brain somehow because that is the same time the passing out (sleeping) started. It just doesn't seem that Central Apnea would just start out of no where. I can't find much info about it anywhere. They did a test with the CPAP machine and with oxygen and that didn't help at all. The first help was the Resmed VPAP adapt SV and the sleep clinic swore that wouldn't help before the test. They were amazed when it did help. I knew it would. I figured my brain has to be helped by the most expensive thing... my luck! I have the worst luck. My DME is just sending me my report and prescription because they said that since my insurance won't pay that they won't deal with me at all. They don't have that machine in their store anyway. And they won't get one for me. She said they haven't had proof the VPAP etc works well enough to buy one. I couldn't afford to rent anyway. I have no money. I barely have enough money to eat, I don't know how I can afford this machine. Why would Alabama Medicaid pay for sleep studies if they aren't going to provide the machine that is medically necessary to help? It makes no sense to me. I consider this a brain problem, but they consider it a respiratory problem and therefore won't pay. I don't get it. Can't a person die from central sleep apnea? I would think that it is as important as a pacemaker.

[OutaSync]

Have you been tested for narcolepsy? Did you have a MLST when you had your sleep study done? When you get your sleep study report, can you post it here?

[Karla1958]

In 2003 I had the MSLT and they said I had idiopathic hypersomnia. Not Narcolepsy. And, at that time, I also had the central sleep apnea but at that time there were no machines available to help and they tried CPAP and oxygen and that didn't help at all. This time they tested the CPAP BiPAP and the VPAP on me and the only thing that worked was the ResMed VPAP adapt SV. They said they didn't need to do the MSLT again because it is caused by the central sleep apnea.

[OutaSync]

That is a very specialized machine and may be hard to come by, even used.

Does anybody else have any ideas for her?

[MMCGOWAN]

Not to sound rude or arrogant as I was in this position once before in my life.

It just does not do one justice to be poor in the good ol US of A

Sorry for your travesty.... you may try some charitable organizations Oprah etc... there are many who are willing to help

[Karla1958]

Do you have an email address for Oprah? You say in your email that "there are many who are willing to help" Do you have any email addresses or names of organizations? I can't find anyone willing to help. If you have a list of organizations or people "willing to help" I'd be grateful for a list of those folks so I can write to them and beg for their help. The sleep clinic and the DME didn't have a clue of anyone that could help me. I've already contacted the United Way and they say they can't help me. They say they don't work with individuals only groups or organizations. I've called the Governor of Alabama (the head of the Alabama Medicaid fiasco) and they say that they can't help either. Please, if you know of "many" willing to help I would be grateful to just have a list of those people or organizations. Thank you.

Karla

[ephraimh]

Hi. I'm new here. I've been searching the internet trying to find someone to help me and I found this site. I just got done at the sleep clinic and they say I have Central Sleep Apnea and I need a ResMed VPAP adapt SV and I should get one asap. My problem is that I live in ALabama and am on SSI and ALabama Medicaid, .

Karla

If you qualify for SSDI, you might be able to more money from Uncle Sam every month.

[Karla1958]

I only qualify for SSI and they are trying to take that away from me too. I don't know how they expect me to work when I can't stay awake to do anything. What kind of country takes away Medicaid from someone that takes over $2000 worth of pills a month. This doesn't make any sense to me. I don't know why they are trying to take away my SSI. I have a very bad back and the hypersomnia and central apnea and emotional problems and I can't work, I don't know what they expect me to do. Does idiopathic hypersomnia count as a disability? My doctors told me not to drive, or do anything that I have to be alert for... so how can I keep a job? I don't understand. I guess I pissed someone off saying how bad Medicaid is... This is crazy. My mom is in the hospital in PA, I'm in AL and I can't even stay awake enough to go up and see her... I wish I could drive, but I already had one accident because of it. I'm so afraid at the end of February that I am going to lose my SSI and Medicaid. Then I'll be homeless again too... I guess they want me not to complain about not have a VPAP machine... I thought Obama was going to make things better, not worse.

[packitin]

I'm sorry for all your dilemmas. I wish there was something I could do.
Could you use a cpap to help you temporarily, until you can find the one you want?
There is one in Charlotte, NC, but it is not the one you want, but you could call and tell them your situation.
They might take a lot less for it.

http://charlotte.craigslist.org/ele/1030675887.html

Jay

[Karla1958]

The sleep clinic tried me on a CPAP and a BiPAP machine and both with oxygen and nothing helped the central sleep apnea. The only thing that helped was the Resmed VPAP adapt SV which was made for people with central sleep apnea. I wish a CPAP would help, but it won't. I've been living (if you can call it that) since 2003 without any kind of machine, and I haven't died yet. I just wish the hypersomnia would be a bit less so I could get up and do something during the day. I keep falling asleep even while I'm eating or drinking. Very messy and I feel like I'm losing my memory and my mind. Each day I feel more stupid. I think I'm killing my poor brain.
Thanks for looking, but a CPAP won't help at all.

[packitin]

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