New Gal needs a Smart Buddy

Hi, Beth.

I can personally attest to the possibility of finding a great deal on the very expensive ASV on CraigsList. My advice: Search CL cities outside of your local area, as these machines are not all that common, and you'll give yourself a better chance of finding one if you broaden the scope of the search. I'm in Arizona and bought my lightly-used ASV in January from a seller in Buffalo, NY (for a very reasonable price, I might add). So it *can* be done.

http://www.searchtempest.com is a helpful search engine which allows you to search multiple CL cities at once. Hope that helps.

bdonahueweedman wrote:Oh dear....I just sent a message to Akcpapguy and it wont get out of my "Outbox"....I can't find anything that says "send"! I promise I'm not an idiot...but how do I send it? Thanks everybody for your patience and help!!! LV B

FYI, messages stay in the Outbox until they're picked up by the recipient. You didn't do anything wrong.

bdonahueweedman wrote: please contact or "friend" me...
Beth

Beth, take a deep breath......and relax.
You don't know it yet....but you have been
"friended" way more than you can imagine.

Welcome!

bdonahueweedman wrote:this website is wonderful and overwhelming at the same time....not sure where to begin,
Beth

Well said. We have all been there.

As you work through this, post what you need.
I have some odds and ends that if you can use
them I will be more than happy to pass them along.

It's a journey.

Thank you mark for your very kind offer! I'm going to start my search as soon as I can make a few "BiPap AutoSV" buddies to really help me narrow down my search! Thanks again! Beth

[quote="Janknitz"]
Now there's a few things you can do to help us help you:
1. Get a printout of your full sleep study--not the one page summary, but the whole 12 or 13 page report including the doctor's summary and recommendations. We'll have questions for you based on that.
2. Get a copy of your prescription for the Bipap and mask--it may come in handy.
3. We need to know exactly what make and model of machine you have and its settings if you have it already or when you get it.
4. We need to know the name of the mask you are using if you have one already. quote]

Janknitz thanks for your reply! I dont think I have a 12 or 13 page printout, I was not able to afford a sleep study. I took home a device and used it for 5 days and they pulled the information from that. I DO have my One-Page though, with lots of stats on it and will be happy to share with you what I have! He let me keep the mask from the study machine, it's a 'Medium quatro mask' and it was pretty comfy, as far as having an alien attached to your head CAN be I suppose...LOL. I do not have a machine. The one I borrowed was an S9 Series auto-pap. It was quiet as a mouse and very slick, but what would wake me up as this firehose blast of air that almost blew my face off. I'm serious I could have blown up a hot air balloon in 3 seconds with that thing.

I am going back tomorrow to pick up a BiPap loaner, I have to try it out before I start trying to round up thousands of dollars. I am finding that since I had to bring that one back I am scared to death to go to sleep without it. I wake up at least 8-10 times a night (although my test said I was having 15 CPAPs per minute at 13 second intervals...) and sit bolt upright trying to get some air. I'm really panicked...my husband is terrified I'm going to die in my sleep. me too.

Anway Thank You so much for your input and please keep it coming!! Thanks...Beth

DreamOn wrote:Welcome, Beth! You are in the right place here! You are to be commended for addressing your addiction problem. I know that must have been difficult to face.

First, there's a nonprofit organization called Awake in America that helps individuals without health insurance, with inadequate health insurance, or without the financial means to obtain a free sleep study. They also supply free equipment to those who can't afford it. See their website for more information: http://awakeinamerica.info/donaterelief/. Your machine may be a little difficult to come by, so I'm not sure how much they can assist you with that, but it's certainly worth a try! Those machines do occasionally come up for sale at http://cpapauction.com/. You could contact http://www.secondwindcpap.com/ also. The RemStar BiPAP AutoSV machine that you mentioned does sell for less than the $5500 MSRP price at https://www.cpap.com, but you need to contact them to find out their price. I know that they are very expensive, but if you find a new one for less online, cpap.com will price match. I'm not an expert on central sleep apnea or drug abuse treatment, so I'll have to leave that part for others to address here. I do know that there are quite a few drugs that can cause central/complex sleep apnea.
You are feeling overwhelmed right now, which is totally understandable. We all felt that way in the beginning, to one degree or another. It's stressful to be diagnosed with any serious health problem, and it takes a while to adjust to that. You're suddenly thrust into a world you know little to nothing about. Just take things one step at a time, and don't feel like you have to learn everything all at once. It will all fall into place.
When you do get your machine, we can help you with the more common problems that may arise with therapy. I think you'll find that you'll be feeling much better once you're getting effective therapy. Many of us have found that xPAP has changed our lives immensely -- for the better! Keep coming back!

P.S. You may want to check out this forum also: http://suboxforum.com/index.php?sid=d12 ... 2e075ebdbd. You could search there or post a question regarding the relationship between Suboxone and central or complex sleep apnea. It's good to have support from multiple fronts!

Hi Dreamon!
Thank you so much for your kind words...it IS tragic that the medicine I need to keep me off drugs is causing this kind of reaction, but when you weight the two out I'll take the Sleep Ap; I have no interest in going back to pain pill abuse again. Also I LOVE the http://www.suboxforum.com..the guy who runs it is so informative and helpful. Unfortunately I have a Subox Doc with a serious God-Complex, who refuses to entertain the notion these could be related, even though my Sleep Doc has assured me thats the case, and I already knew it a month after starting Suboxone treatment. (By the way, anyone who is wrestling with a pain pill addiction I will be happy to tell you about the miracle of Suboxone or answer any questions on my experience if you want to PM me) This is one of the horrible things about not having Insurance; I can't change Docs and you can't tell him ANYTHING. I did contact AwakeInAmerica and their offices are "temporarily closed"...but will keep searching all of the helpful links presented to me here! So for now I will let this group guide me...really amazing. Thanks so much! beth

Good luck with your search, Beth. One more search link that just might pan out: http://www.dotmed.com/auctions/featured/

I have seen a couple used BiPAP AutoSV machines in the $1500 price range there.

FoxNewsFan wrote:Three excellent replies above. Isn't this forum great.

Please post a list of exactly what you need. I have a lot of different things in storage and if I have anything on your list I would be happy to send them to you for free.

Ed

Thank you Ed! I need a "Phillips Resperonic BiPap Auto SV" ...and thank you for reaching out to me! Beth

Muse-Inc wrote:Hang in there Beth! Keep reading...if you're like most of us were in the beginning, it's gonna several read throughs and explanations before it all makes sense. Kudos to you for asking of rhlep early on and your doc for sending ya here...great place, good folks, profound info & help! Welcome aboard!

PS Might call local sleep labs and hospitals to see if any know of where you might find some help/ organizations who might provide equipment.

Thank You Muse! I think I jumped the gun and *thought* I had found one, still waiting to hear back from the guy...but I'm pretty sure I'm wrong..ugh! But thank you for your encouragement and ideas!! Beth

elena88 wrote:Hi Beth from Nashville!

You really came to the right place, you cant do this by yourself, but there are so many "smart buddies" here, who have already
pointed you in the right directions..
When you get a chance go up and click on the cpap wiki icon on the top of the page.. You can learn about the different machines, and a little
about the one you will be needing. There are folks here who are being treated for central apnea, so you will find a wealth of knowledge from
them.

I dont know how you feel right now, but the machine you need should really help you with your breathing.
Whatever you do, no matter how frustrated you get, dont give up, you get that machine, and everyone here will get you through the rest of it..
Craigs list is a great start to look, and even some old fashion computer illerate folks might have put a machine in the paper too, we always forget
about that.. so have all your friends check the papers for you, craigs list, you can even google the machines name you need "for sale"...
whatever works..

All the best!

elena

Thanks Elena! I really appreciate your encouraging words! Spending a lot of time looking around today...good greif theres a LOT!! Beth

kteague wrote:Welcome! Hey, one time I saw someone post on Freecycle that they wanted a cpap machine. Within hours they had posted they'd received one. Your need is so specific it would be harder, but try to think out of the box. Just be very careful about sites like Freecycle and Craigslist, lots of dangerous people out there. Do check here with specifics on any machine you are considering. The names are so similar it's easy to get them confused.

Thanks K! Never heard of Freecycle...will check it out NOW! Thank you SO much!! Beth

cpapernewbie wrote:Great advice
Just skip http://www.secondwindcpap.com/ - their price is still out of range for people without insurance
skip also e-Bay - e-bay does not allow CPAP equipments for listing
skip AWAKE - this org has never been awake, let alone helps. closed for months and nobody care

check: Craiglist - this is a very useful site and available for each small and big city in North America, price varied from outrageous: $500-$1000 for 10 years obsolete and barely useful CPAP device, very useful but you need to know and do you home work first

check CPAPauction.com: very useful but you need to know and do you home work first

check kijiji.com - this is an e-Bay related website but directed to local, just like craiglist

Eventhough you do not have insurance, there is a lot of options. I know one who bought S9 new for 30%-50% price off of the price of the already low cpap.com

Wow! Lots of info there! I was wondering how Ebay could sell w/o a script! Will check these sites out and report back..and thank you!

JohnBFisher wrote:Greetings Beth! You appear to have a cheery disposition (based on both your pic and posts. That will help you through the process.

Yes, you definitely found the right place. The machine listed at CPAPauction.com is not an ASV unit (an Adaptive Servo-Ventilation) unit. It is another brand that helps folks with COPD (Chronic Obstructive Pulmonary Disease). You need an ASV unit, which addresses Central Sleep Apnea.

Right about now, you are probably wondering just which looking glass you happened to wander through. The good news is that coming here was probably the best thing that you could do for yourself.

Your best best will be to read, read, and read some more. You are correct that many doctors simply do NOT understand the complexity and interrelationship of our central nervous system and breathing. You will need to learn more to help guide your doctors through the process.

So, here's a set of

Links to Central Apnea
viewtopic.php?p=457566

There are a lot of scientific articles listed toward the bottom about Central Sleep Apnea.

Adaptive Servoventilation (ASV) in Patients with Sleep Disordered Breathing Associated with Chronic Opioid Medications for Non-Malignant Pain
http://www.ncbi.nlm.nih.gov/pmc/article ... .4.311.pdf

Also note that Suboxone CAN cause slowed breathing (which would result in central sleep apnea in severe cases). It is one of the noted side effects. See:

http://www.drugs.com/suboxone.html

I will post more later, but this should get you started.

Oh my Gosh John thank you so much for doing that bit of detective work for me! I *knew* it was too good to be true! I am searching all other sites suggested, but so far it's goose eggs. The Freecycle.com site was a link to lots of spammy sites...unless I typed it in wrong? Its a shame these sites come and go so quickly! Thanks for looking out for me..I will be flailing around and asking lots of idiotic questions I'm sure! If you come across what I need please let me know! I promise to Pay It Forward to a newbie when I'm an old pro like all of you! Don't hold your breath tho...wait is that in poor taste here? LOL...I haven't been able to breathe for a year so to me I gotta go for the humor anywhere I can! Thanks again John! Beth

BleepingBeauty wrote:Hi, Beth.

I can personally attest to the possibility of finding a great deal on the very expensive ASV on CraigsList. My advice: Search CL cities outside of your local area, as these machines are not all that common, and you'll give yourself a better chance of finding one if you broaden the scope of the search. I'm in Arizona and bought my lightly-used ASV in January from a seller in Buffalo, NY (for a very reasonable price, I might add). So it *can* be done.

http://www.searchtempest.com is a helpful search engine which allows you to search multiple CL cities at once. Hope that helps.

bdonahueweedman wrote:Oh dear....I just sent a message to Akcpapguy and it wont get out of my "Outbox"....I can't find anything that says "send"! I promise I'm not an idiot...but how do I send it? Thanks everybody for your patience and help!!! LV B

FYI, messages stay in the Outbox until they're picked up by the recipient. You didn't do anything wrong.

WOW! That Tempest is INSANE! What a GREAT find! It came up with one in Los Angeles, but it had already been deleted. Thanks so much Bleeping! Beth

Beth,

I have been in the same boat as you with everything having to come out of a shrinking pocket.

I am no expert but I believe you want to look at at least these 3 models. Respironics BiPAP autoSV and Respironics BiPAP autoSV Advanced. The ones I have seen have the appropriate name in big lettering on the top of the machine (BiPAP autoSV or BiPAP autoSV Advanced). A lot of the Respironics machines will look basically the same in terms of the body, so look for the name. The other one I know about is the ResMed VPAP Adapt SV. The ResMed has a different approach to how it does the SV function, but it still seems to be a state of the art machine. As the function of these two brands is different the set up (titration) may vary and you need to be sure your sleep lab can do it for a particular machine. There may be other SV machines as well, but I am not aware of them.

I am in the LA area. There is someone here who keeps posting in Craigslist for a new VPAP Adapt SV for $2250, which is the lowest price I've seen on this new. Either he keeps relisting the same machine or moving more than one machine. In my time of searching Craigslist I have seen a lot "new machines, never used" machines being posted by several people (same with cpapauction.com). This makes me wonder if there might be a grey market where someone(s) has some kind of connection with a DMEs where they can keep getting stock. In that instance be aware of warranty issues as many vendors will only warranty if purchased from an authorized dealer. But the price can be significantly reduced. And recently there were some Adapt SVs on DOTmed for around $1850.

Also regarding craigslist, I find that sometimes people will not put in the correct keyword listings. So when I search for these I do the following searches: BiPAP, BiPAP autoSV, VPAP, VPAP AdaptSV, APAP, Auto-CPAP, and then just CPAP which shows the broadest amount of listings. You could also search for Respironics and/or ResMed. I've actually found a lot of things "misfiled" so to speak.

Lastly, as a word of encouragement just last Sunday I was able to pick up a very clean, relatively low hours BiPAP autoSV from a private party on Craigslist for a very reasonable price. So hang in there. It might take a little time (and yes I know the wait can be excruciating) but you can get what you need.

hey Sleepingbeauty, you are genius!

I happened to search craiglist frequently and I do this task in a dumb way, one city each time searching for CPAP. the Searchtempest enable me now to key in just my postal code and all neighboring cities within 200 miles are searched. What a great tool. This will save me lots and lots of hou!rs in future