Resmed VPAP adapt SV for Central Sleep Apnea

I asked a small company to donate a mask for my use and they agreed! They aren't that big at making CPAP masks, but they are a wonderful compassionate company! They make the mask that I think will fit my weird shaped head. And I have buck teeth and I think this mask will fit without interfering with my teeth. This mask rests on the chin, which is great and it doesn't have a big clunky thing sitting on your forehead at night. Also this mask has headgear that has more adjusting areas than most of the others. The Comfort Gel Full Face mask that I bought just doesn't fit my head properly. What a waste of money that was! I hope to go to the DME today and get an exchange. I know what is wrong with it now. I don't think it's long enough. I put their guides on my face and it looks like a Large would fit better than a medium. I knew there was something wrong when the mask rested on my nose and made me so sore the first night. I was never sized for this one. It's just the one that they used at the sleep clinic (the only one they had that day, I think. The only one they showed me. They didn't size it either) Anyway, hopefully the new donated mask will solve all my problems. I think it will. What a great company to donate a mask. I should say who it is, but not until I get the mask in hand. Then I can tell you all how great it is too!
Thanks KR for donating the mask! I know I will love it!

Karla

Karla1958 wrote: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,

It is a sad fact that cigarette smoke contaminates these machines & thus few other people will ever want it after even one week near a smoker. It is near impossible to clear out the smell short of adding an even stronger one (some kind of perfume).

Your hope is the machine works for you because if it doesn't it will be of little use to anyone else.
These are issues you need to think about but - beyond them the Biap Auto SV is a great machine & can deliver excellent therapy. You are very fortunate to get such assistance.

Good luck

DSM

ozij wrote: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.

I can tell you about the smoke Karla,

If you are there because your room-mate is paying the rent he is still going to kill you with his second-hand smoke. Smelling smoke from your machine with every inhale is probably the least of your worries.

Good luck.

Banned

You might want to skip my rant. Please, don't take it personally.

I am grateful for having a place to live, even with the smoke. For a while I was homeless and that really sucked. I don't see how I could use a CPAP machine if I'm living in a cardboard box under a bridge somewhere.

I've lived around people that smoke from the time I was born until I moved out when I was 17. Both my mom and dad smoked cartons a week and back then nobody ever said how dangerous it was to smoke around the children. I remember many times when I was little bumping into my mom's lit cigarette... or ashes falling in my food... or ashtrays, large ashtrays, full and cigarette butts falling out because it couldn't hold anymore... Yes, I know cigarettes and the dangers and have never smoked or wanted to. I was sick of it when I was a kid. And as soon as I could find a way out I did it, even though getting married to a non-smoker wasn't the best way out, it was a way out. If I am going to get lung cancer or COPD or any other lung diseases, I would believe that the lung damage occurred between the ages of 0 to 17, not now. My dad died of lung cancer in 2005, even though he quit smoking in the early 80s. He smoked since he was around 12 or so, not a big crime back before 1950. At least it wasn't where he grew up. I remember even television had doctors smoking in the hospital over patients beds... Ben Casey, wasn't it? Nobody cared about smoking then. I knew from an early age how gross it was. My mom always had a cigarette hanging out of her mouth when she fed us or gave us a bath. It was crazy. My mom now has COPD, emphysema, asthma, PAD, needs a quad by pass, has had all her veins reamed out because of the cigarettes she used all her life. She is still alive but hooked up to oxygen all the time. We thought she was going to die in January and February of this year. She was in the hospital for about 2 months. And she couldn't have a cigarette for two months either. I'd almost bet on it that she has had a cigarette now that she is home again. I don't know for sure, but even though she got them out of her system in the hospital she still craves them horribly. Even though the doctors told her she had to be cigarette free for 3 to 6 months before they did the by pass, I don't think she cares. She would rather smoke then do anything. I told her that I cannot visit her with her smoking like that and you know, I think she chose the cigarettes over me visiting. And I haven't seen her since 1990! I know I'll lose her to the cigarettes. I hope that is what they put on her death certificate, because it's true. So, you see, I've probably been infected with the tar from the cigarettes from my first day of life! I probably have cancer being to grow in my lungs right now... Children's lungs are the most sensitive and the cancer will wait 40 or 50 years and then bite you in the butt. I don't think my present roomie's cigarette use is going to affect me much compared to what I lived through from 1958 until 1976... which was 2 parents smoking about 3 packs or more a piece every day for my entire childhood. I'd love to have my present doctor yearly get an MRI of my lungs just to be sure I don't have anything starting up in my lungs, but I have Medicaid and unless I'm dying they aren't going to pay for a yearly or every other year MRI of my lungs. Heck, I asked for a chest x-ray and they won't even do that. I cannot get the doctor OR Medicaid to take me serious about preventing lung cancer even though I lived through all that childhood torture. They will do a pap smear every year but not an xray for lung cancer. Does that make sense" NO!

If anyone has a low rent place for me to go (and you are paying for the moving costs because I can't afford that either) then I'd gladly move to a non-smoker apartment. But I've been through being homeless and the roomie's cigarette smoking is not enough for me to go back being homeless. Until you've been truly homeless, you won't understand the fear of it. Sure I could go live with my mom in PA, but I don't want to go live with someone who probably smokes even more than my roomie does now. And besides, I don't have the money to move from AL to PA. My sister just went and visited my mom and she says the smoke on the walls is so bad that she tried to clean the walls, but the crud from the smoking just seems to reappear as soon as you wipe it away. I don't think that situation would be better for my lungs then where I live now.

So, you see, as much as you people tell me how dangerous my roomie's smoking is... well, don't you think I already know?? I hate the smell. Everyday I'm nauseous from it. But being poor prevents me from going out and getting any place that is smoke free to live. You can't do anything without money these days. And I don't even have enough money to buy food, how on earth could I move or put down deposits or anything. Maybe if someone really cared, maybe someone would offer real help. But there isn't a soul on this earth that really cares. You may act like you care, or write about how my situation is bad for me and my lungs, but no one... not one person will ever be able to come up with an answer that is doable. Everything takes cash (or credit) and I have neither. And I don't think that being homeless in the great outdoors is better for my lungs. I would say the car and bus exhaust is worse then the cigarette second hand smoke. If you can think of some better place, I'd love to hear your ideas.

If I had a 5 inch whisper fan (like from electronics) and an aluminum dryer hose, I could make a great exhaust system for all his cigarette smoke and smell. But I cannot afford to buy either, so I'm out of luck. I used to have my homemade system hooked up but when the roomie left for a year to work in another state, my exhaust system got taken down and I believe it got thrown out by accident. (It stunk of 10 years worth of cigarette smell-disgusting!) For ten years you couldn't even tell that the roomie smoked in the apartment at all. His smoke went right up and out of the window through my homemade exhaust system. IT was great and worked amazingly well. Oh well, maybe someday I'll stumble upon a fan someone is throwing out...

Sorry about the rant, but it bugs me how everyone has an answer but no one is willing to help. That's the American way, it seems. I guess I should not have written here that I live with a smoker. Believe me, If I had the resources I'd live in a clean smoke free place.

Karla
(Sorry If I made anyone angry, I did not mean to. I apologize to everyone for my rant in advance!)

I was in your position with complex sleep apnea. I knew I needed a sleep test but nobody would provide it. I moved to NJ where they have a charity care program. TG Now I have the best insurance of my life.
My friend had narcolepsy and couldn't pay for the medication while going to school. Now he's dead. Totally avoidable death due to his illness.
Do you have complex sleep apnea or just central sleep apnea? There are other ways to treat the disorder that are less expensive (co2 infusion, meds, etc.). Exercise always helps. I had to force myself with 20x's the exertion I now face to get out the situation you were in. The technology is only 3 years old, what did they do before then?

Sorry to hear about your problems, but I can certainly appreciate all that you are going through.

I was diagnosed with severe combo sleep apnea about 5+ years ago, albeit I have been living with it for at least 10 years.

i'm a 39 year old white male, and live in Washington. I also have 2ndry progressive multiple sclereosis.

I have been on disability for for close to 10 years, and have not slept for more then 2 hours a night in that time frame (except a 3 day fluke). I do attempt to use the ResMed at night, albeit it is unsuccessful in my case.

I have also had 2 Hallucinations this past year, the first one i was standing in my lungs (think of the incredible shrinking woman/man) pounding on then, shouting "WAKE-UP OR DIE!" over and over. the second one i was asleep, and there was someone in my bedroom trying to suffocate me by pinching my nose closed and covering my mouth. when i finally could see who was there, i was looking at myself. after i knocked the intruder off of me, i woke up.

i have decided the next time i have a dream like this, i am not going to try and wake myself up. i am going to be 40 years old, and am completely useless. i am in chronic pain and am always tired. i am not suicidal, just really tired!

steven

Confused. You say "I only have $12 to my name." How did the $12 get you as far as you have? Someting about this story seems fishy, are you sure this is not a scam? Be honest now.

Karla, How did you get the BiPAP Auto SV you have listed in your equipment profile?

You got the Resmed Co. to donate an SV machine to you, that costs thousands of dollars. Then you replay them for this extreme kindness by poluting and ruining the machine with cigarette smoke? The machine should have gone to someone who appreciates it enough to take care of it, and that plainly is not you. What a waste. Some deservering person was deprived of it, if you got it then they didn't. Like getting an organ transplant, and then continuing to drink, smoke, etc. Thus depriving a reall deserving person of it.

This whole thing seems fishy to me. This lady, who appears to come directly from her appearance on the Jerry Springer Show, something very weird about all this!

Karla

I work in a DME company in the midwest. I understand your delima...but you are the reason that healthcare costs are high. Get up out of bed, look for work, and get insurance. You are posting NOTHING but "give me handouts" and "I deserve better". Try taking responsibility for your own life, and not Medicade taking care of you.

If Respironics did indeed give you a Adapt SV machine...it will be the last charity machine you recieve, because you are not valuing it for what it is worth!! There are charities in Alabama that would buy you a bus ticket to move away. Leave you posessions behind and start over. The life you portray is a pitiful one, and you are not thankful for the blessings you have.

I think you are a con, and should not post on good places like this.

~~Concerned American~~