Resmed VPAP adapt SV for Central Sleep Apnea

If the VPAP is $3000 or $5000 or more it doesn't matter because I can't afford one that costs $200... or $100 or less. I have no money at all left after paying all the monthly bills. I had to spend the rest of my monthly income on food shopping. So now I am counting pennies again until March 1st. Unless someone donates the VPAP to me I will never be able to get one. I have to go for some kind of SSI test and since I'll probably just sleep through it I'll probably lose my SSI anyway... They scheduled my appointment at 8:45 AM! There is no way I can be awake at 8:45 AM. I tried to change it but they wouldn't. I don't know what they are expecting of me. Maybe SSI doesn't even know what hypersomnia is. Could that be? This is crazy. They are making me a nervous wreck. Do they even give SSI for narcolepsy or hypersomnia or central sleep apnea. Since I have no control over my sleep apnea they shouldn't take away my SSI, should they? How do they expect me to work? Or even stay awake?

The only thing I can think of is to do something only some major labs in the country have tried over the years, it worked, but it really should be monitored due to the CO2 issue. Every mask has an exhale port in it. Its usually on the elbow of the mask, the part that attaches to the hose. You can order a piece that will cover this area. Now you mask has no exhale valve on it. They sell whats called a whisper. What you do, is you attach it on the end of the mask, the part you would connect your hose to. Then you attach your hose there. The whisper has an export valve on it. What this will do is raise your Co2 levels. Our body breathing is based off of how much Co2 we retain. This will allow you to retain more Co2, which in many cases will resolve central apneas. Please be careful with this advise though, it won't work for everybody.

Karla1958 wrote:If the VPAP is $3000 or $5000 or more it doesn't matter because I can't afford one that costs $200... or $100 or less. I have no money at all left after paying all the monthly bills. I had to spend the rest of my monthly income on food shopping. So now I am counting pennies again until March 1st. Unless someone donates the VPAP to me I will never be able to get one. I have to go for some kind of SSI test and since I'll probably just sleep through it I'll probably lose my SSI anyway... They scheduled my appointment at 8:45 AM! There is no way I can be awake at 8:45 AM. I tried to change it but they wouldn't. I don't know what they are expecting of me. Maybe SSI doesn't even know what hypersomnia is. Could that be? This is crazy. They are making me a nervous wreck. Do they even give SSI for narcolepsy or hypersomnia or central sleep apnea. Since I have no control over my sleep apnea they shouldn't take away my SSI, should they? How do they expect me to work? Or even stay awake?

I know in the state I live in it depends of the severity. Many times people get rejected the first time, but they get accepted the 2nd. weird huh? BTW, as far as the machine is concerned, call the hospitals in your area, and the DME's. The lab I work at we get machines donated to us from spouses who's spouse died, or maybe they just didn't want it anymore. We give away about 1-2 machines a month. Its worth a shot.

There is nothing to apply for. No forms to fill out. Every DME knows that Alabama Medicaid doesn't pay for machines for people over 21 so they just send you your paperwork and tell you to call when you have the money saved up to buy a machine. Alabama Medicaid RULE- no one over 21 gets a machine-period. It doesn't matter how bad you are, they just don't deal with it if you are over 21. It's just like ALabama Medicaid provides 100% dental coverage to people under 21 years old and if you are over 21 you get absolutely nothing dental covered. That is why you see all the Alabama poor folks with all the teeth missing. There just isn't any care for anyone here that is over 21. There is no Vpap adapt SV machines in this area. I've checked with them all. And no one is willing to donate any machine and especially one that is so expensive. Some places here won't even carry the VPAP adapt SV because they are too expensive they are afraid they will be stolen from their store. The one DME told me that if I come in with cash they could possibly order one for me.

polysomno-man wrote:The only thing I can think of is to do something only some major labs in the country have tried over the years, it worked, but it really should be monitored due to the CO2 issue. Every mask has an exhale port in it. Its usually on the elbow of the mask, the part that attaches to the hose. You can order a piece that will cover this area. Now you mask has no exhale valve on it. They sell whats called a whisper. What you do, is you attach it on the end of the mask, the part you would connect your hose to. Then you attach your hose there. The whisper has an export valve on it. What this will do is raise your Co2 levels. Our body breathing is based off of how much Co2 we retain. This will allow you to retain more Co2, which in many cases will resolve central apneas. Please be careful with this advise though, it won't work for everybody.

That strikes me as something that I would not advise anyone to try at home. It's a bit hit and miss, and the consequences of missing are a bit too high for my liking. I'd say to deliberately increase the CO2 levels without (at the very least) the means to monitor your blood oxygen levels is irresponsible. And I've been called irresponsible before so I should know what I'm talking about.

Actually I worked in a lab in Boston that did that back before SV's came out. It used to be one of the only ways to treat Cheyne Stokes. Back then the term Complex Sleep Apnea hadn't been thought of. That was given to us by the great Mayo Clinic. Its a poor man's SV now adays. In the state I work in now, Medicaid doesn't pay for the SV's, so from time to time I will try this trick. It works better if the patient has COPD though.

People with COPD have too much CO2 in their lungs anyway.
That Boston lab must have fired you, Mrs. Tatis.

Somebody what threatening to destroy this forum recently - and looks like you're attempting to do this with bad, dangerous advice.

O.

Mrs. Tatis wrote:Actually I worked in a lab in Boston that did that back before SV's came out. It used to be one of the only ways to treat Cheyne Stokes. Back then the term Complex Sleep Apnea hadn't been thought of. That was given to us by the great Mayo Clinic. Its a poor man's SV now adays. In the state I work in now, Medicaid doesn't pay for the SV's, so from time to time I will try this trick. It works better if the patient has COPD though.

You must have worked with polysomno-man then...

ozij wrote:People with COPD have too much CO2 in their lungs anyway.
That Boston lab must have fired you, Mrs. Tatis.

Somebody what threatening to destroy this forum recently - and looks like you're attempting to do this with bad, dangerous advice.

O.

I'm pretty sure it's the same person.

Bingo, Colin.

It's certainly a terrible situation. if you only have $12, then all this talk about covering up the exhause port of your mask is just air anyhow, you don't even HAVE a mask! You can't afford even the postage to have one mailed to you. The ONLY thing I can think of, if this is truly a LIFE THREATENING situation, is to get OUT of Alambama! Other than banjoes on knees, what do they have down there to attract you. Just get the h--k (that's heck) out of that place. You are talking about your life here. George Wallace or whoever is in charge there now, he won't help you. Huey Long, folks of that ilk. It's a great part of the country!

I'd love to get out of Alabama. But where can I go? I don't have any money. And, you are right, I don't have a mask. I don't have any kind of machine at all. I don't know what that talk was about. All I know is what the sleep clinic told me to get. I stay in Alabama because I don't have the money to move. And where are I going to go? How can I even find a place without money. The doctors say that I shouldn't drive, so how can I move? It's not safe to drive because I fall asleep all the time without warning. I understand your thinking, get out of Alabama, but how can I do that. I have $2000 worth of drugs I take a month (around $35 in co-pays for me.) I can't afford to be out of the state for long because I need to refill my prescriptions. Alabama medicaid does have a half way decent prescription plan... You have to fight for each expensive pill, but most of the time you eventually will get them or there will be some substitute that you can't turn down. And if I'd move I'd have to find all new doctors and there aren't that many that take Medicaid anymore. It's just ridiculous to tell me to move without telling me where to move to, or how I could afford it? Like I said before, I'm counting change here to buy food. There is no money to move. Or buy a VPAP. I'm in a situation that is like being between a rock and a hard place. I don't know how people in my situation supposed to get a VPAP except to have someone donate one to me.

I am getting my Resmed VPAP adapt SV... HOORAY! I've been looking for some organization or program and I put up a post on "Wish Upon a Hero website and ResMed is going to give me one at no cost! I have to thank that website because they can make things happen. I don't know what they do or how they do it, but they are amazing. The address is http://www.wishuponahero.com

At first no one could believe that Alabama Medicaid would pay for all the sleep studies but they won't pay for any CPAP, BiPAP or VPAP machines for anyone over 21. The machine I needed costs between $3000 and $5000 and there is no way I could afford that machine. I am on SSI and live on $674 a month. After rent and food there isn't any way I could save $3000! So, I wrote a wish at the Wish Upon a Hero site and a wonderful wish ambassador Therese kept asking around until she found just the right people to help me. I had called ResMed directly before but they said I had to go through AwakeinAmerica.info, but the people at that site told me that they don't supply VPAPs because they are too expensive. But somehow the wish ambassador got to the right people, the people that actually care about the folks that cannot afford their machines. And with the help of a local CPAP supplier/store I am going to get my VPAP at no charge or I guess it's a rental with no monthly fee. The only thing I have to do is come up with is $125 for a mask and whatever the personal stuff is. I don't know yet. They also said they would take payments on the $125, which is wonderful because I rarely have that much money at one time. I'm so very lucky to have accidentally found that website. I was just surfing the internet for help for hopeless situations and I put up my wish. I haven't received my machine yet because the DME people had to order the VPAP machine, it's not something that anyone here in Alabama keeps on site. I assume that not a lot of people can afford them and the DME folks are probably afraid someone will steal something so expensive if they keep them in their shops. I don't know if someone would ever steal a VPAP machine, but if you don't have insurance that covers it and you are poor and don't have a spare $5000 hanging around (which you can't if you get SSI, if you had that much cash you would lose your SSI because you would have too much in savings to continue to get a SSI check. A no win situation!) I guess the only things left is to wish for a machine or steal it. Someone should change this with Alabama Medicaid. They should pay at least a portion of the cost of a VPAP, or CPAP or BIPAP machine for people over 21. Or save themselves some money and quit paying for the sleep studies altogether. It makes no sense to have an expensive sleep study just to be told that you can't have a CPAP machine even though you need one. It's like saying that "we have the cure, but because you are poor you can't have it. Screw you poor person." And not everyone that has Alabama Medicaid gets Medicare. I am proof of that. I believe that Medicaid thinks that someone else is going to cover it, but if you are poor you usually don't have any other insurance. It doesn't make sense, does it? But if you were born in Alabama or were diagnosed before you were 21, then you get a machine for free. Someone please tell me why the life of a 20 year old is more valuable than the life of a 23 year old? Or a 30 or 50 year old?
So, I know, I rant about this... sorry. It just doesn't make any sense to me. Take some of the war money and put it towards health care! Everyone thinks it has to increase taxes, but all the government has to do is to keep a watch over their money better and keep criminal politicians from stealing it. Here in Alabama almost all the politicians eventually go to court for stealing money. It's the most amazing thing I've ever seen. I think right now an ex Governor is in prison for stealing money. No wonder they make the Medicaid so lame. It's crazy. And sad. Ok. rant done.

I'm happy I'm getting my VPAP machine. It will probably be here early next week. I was told that the WishUponaHero.com website is going to write a story about me and getting me the VPAP machine. Pictures and all... yucko! I'm a bit freaked about that, but then everyone knows I'm poor already, so what does it matter if they put my life story up on their website.

Now, I have one question for all the CPAP VPAP and BiPAP users out there... How do I keep my cats away from the hoses and mask? They love to chew on plastic, any type of plastic. I'm afraid they are going to mess up the hose in a matter of minutes and I can't afford to replace anything. Is there a way to make a hose cozy to slip over the hoses or something else to prevent the cats from messing with the hoses? And I was wondering if the machines or masks scare cats the first few times they are used? I'm afraid my cats will run over me or break something in their crazy freak-out like when I turned the vacuum cleaner on for the first time. I'm sure after a few days they will be fine with it. They now don't even care when I vacuum at all. I actually caught them yesterday sitting on the vacuum cleaner! They aren't afraid of it anymore. Anyone have any ideas on how to ease them into this or am I just being overly worried about this? It would be so much better if I could clip their nails, but they hate me to even try. They have very long very sharp nails right now and I can't afford to take them to the vet for a nail clipping. Oh, a rant against sharp nails... sorry.

Please excuse the typos (and the long length of this), I'm writing this half asleep again. Hopefully soon I'll be more awake. And, you lucky people, this will probably be my last rant for a while. Thanks for putting up with me for these last 2 or 3 months. I'll probably be back after I get my machine asking for all kinds of help on upkeep of the thing or how to fix cat damage... Thanks for all your help.

Karla in Alabama

Oops, I made a mistake. It is a Respironics BiPAP autoSV with Encore SmartCard that they gave me. I picked it up yesterday and am using it for the first time tonight. It must be the same as the ResMed VPAP adapt SV, just a different name. I wondered how ResMed all of a sudden wanted to help me, when I wrote to them in the beginning of all this they said they don't work with individuals at all-they only work through AwakeinAmerica.info (which told me they don't provide VPAP machines because they are too expensive.) So I was wondering why ResMed decided to help when the Wish Upon A Hero person contacted them. I guess they wouldn't because, like I said before, this equipment is all Respironics stuff. It looks like wonderful stuff. Seems like its a pain to clean, but I guess I have to get used to it.

One question-- The lady at the DME place said that my roomie would have to smoke outside from now on or the machine could only have a lifespan of ONE YEAR. Is this true? I know he will not smoke outside--ever. He loves his cigarettes, it doesn't matter how much they bother me. He was nice enough to buy me 4 of the white replaceable filters for the machine, but is that enough to keep the cigarette smoke out of it? I always go to be hours before him and he keeps smoking for a few more hours... It's in another room, but my room is next to the air conditioner intake and all the household air eventually comes towards this end of the apartment. Is there anything I can do to protect my machine from the smoke or does he really have to go outside from now on to smoke his butts? He's not going to like that part of this. He does have a tendency to chain smoke... I can smell whenever he lights up. Now I'm really worried about my machine!!! Anyone know of a way to avoid this? Please don't tell me to move, I'm very poor and can't afford to.

Thanks everyone.
Karla

Karla, I don't know what to tell you about the smoke, I just want to say how happy I am that you got the equipment you need so much.

O.