New Gal needs a Smart Buddy

[bdonahueweedman]

Hi Everyone,
I was diagnosed with Central Sleep apnea about a week ago, and have had so many terms thrown at me in the last few days my head is spinning. All I know is I need a 5 thousand dollar machine (https://www.cpap.com/cpap-machine/bipap ... -cpap.html) and I have no Insurance. I have a really great Doctor in Nashville, who is charging me very mimimal fees for Office Visits, but right now I dont even understand what I HAVE. I DO know that all of this started when I began taking Suboxone, which is an opiate antagonist. That means I must take this pill in order to stay off of drugs. I'm a 48 year old married woman who was horribly addicted to pain pills for many years. Suboxone is a true miracle for people like me, but I began to have trouble breathing right after I started taking it. My Suboxone Doc is an idiot. He flat-out told me "You are not having trouble breathing because of the Suboxone". Unfortunately I am not in a position to change doctors because there are only a handful of Doctors who can prescribe Suboxone, and only one who will see you without Insurance. My sleep Doc said "Your Central Sleep Ap is a direct result of the Suboxone." Quitting Suboxone is NOT an option. The resp tech explained what I have about 6 times but she talks so fast I still have no idea what she said. I have a "statistics" sheet printout, but the bottom line is that I must have the ASV machine to breathe.

My Primary Doc is wonderful, but she only knows the basics about Suboxone AND Sleep Apnea. I need a patient person to walk me through this. My Doc directed me to this board, and I'm so overwhelmed with this website I'm ready to cry. I'm sure I'm posting this in the wrong forum, and I just really can't take someone yelling at me right now, I already feel like enough of an idiot. I just need a buddy who truly thoroughly knows all about this stuff, it's my life here and I have no idea who to turn to. Thank You Beth in Nashville

[STL Mark]

Some of your options regarding the expense of a $5000 machine are; craigslist, http://cpapauction.com, http://ebay.com

Some of the less expensive bipap machines may be of assistance to you prior to you finding an AutoSV for an affordable price. I have seen used bipap machines sold on craigslist in the St. Louis area for less than $500. I would assume it would be the same in most large city areas. Good luck in your search, if you see a machine in St. Louis craigslist and you want to PM me about it, I can go by and look and give you my thoughts on the care and cleaning it has received. Or ship it to you if you find one that is in your budget and don't have a large town near you.

[Janknitz]

You're NOT posting in the wrong place--you've come to exactly the right place and you're very welcome to be here. Kudos to that doctor for pointing you here!

We can help. I'm not "up" on BiPap's and ASV's but others are, and if you put BiPap in the search box you'll see the "unofficial bipap users" thread where you can find lots of people that know your machine and the issues you face on Bipap. For everything else--masks, hoses, getting used to the machine, sleeping positions, pillows, reading your data, etc, we all can help.

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.

You are not alone--you have entered a new world with a steep learning curve. Some of us are just a page ahead of you in the book, others have vast experience. All are willing to help. You need to enter "xpap university" by starting your journey by clicking on the yellow lightbulb on the mast head and read, read, read. Hang in there!

[DreamOn]

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!

[FoxNewsFan]

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

[DreamOn]

Isn't this forum great.

Yes, it is! I believe that this forum has literally been a life-saver for many people!

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, that is so generous of you!

Beth, if you can tell us which particular mask model (including size) worked best for you during your titration sleep study, perhaps someone here can help with at least that. If not, you may be able to get one through Awake in America. Some medical equipment suppliers (DMEs) may be compassionate too. Masks are often returned to them. My DME told me to keep a mask I was going to return because he said he just throws them out since the manufacturer didn't want it back!

[bdonahueweedman]

Wow everyone thank you for being so welcoming! I would like to address you individually, but for now I DID contact "awake in America" and unfortunately their "offices are closed" until further notice! I emailed them anyway and did not receive a reply so I guess they aren't kidding! I promise to invetigate all of your replies and links tomorrow, but for now thank you SO much for your kindness and suggestions! Beth

[Muse-Inc]

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.

[elena88]

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

[kteague]

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.

[bdonahueweedman]

Hey Everyone, I found one! (http://www.cpapauction.com/auction-list ... chine.html) and I am not sure if it's the same as the one I said I need! I emailed Akcpapguy but it came back as a undeliverable address. Can you tell me if it is the same machine as (https://www.cpap.com/cpap-machine/bipap ... -cpap.html ) ? It LOOKS the same to me, but I'm not sure what I'm looking for exactly. I'm still going to reply to everyone today....you all are amazing to embrace me...because i sure am LOST!! LV Beth

[DreamOn]

Beth, Akcpapguy is a long-time member of this forum. You can contact him via Private Message here: viewtopic/t53351/memberlist.php?mode=vi ... le&u=16393.

I really don't know anything about the more sophisticated machines, but it looks like you need a machine that runs in SV (servo-ventilator) mode. I don't believe the machine you referenced at cpapauction.com is capable of that, but please confirm with someone who knows what they're talking about! Akcpapguy or another forum member may be able to clarify things for you. There are some SV users on this forum, so perhaps you could start a new thread with the exact name of the machine you need in the title -- something like: "Need RemStar BiPAP AutoSV or similar machine - Please Help".

Also, BE SURE that you do know exactly what you need. Confirm it via your prescription. If you purchase a used machine, ask if there were any smokers in the house and find out how many hours the machine was used. Make sure it is in excellent condition.

You may need a humidifier too. You'll have to confirm with someone more knowledgeable than I that it would work with your machine, but the Fisher & Paykel HC-150 is a good standalone humidifier. That can be purchased for less than $100 (sometimes new), on eBay, cpapauction.com, or elsewhere. Or maybe a forum member has one they no longer need.

[cpapernewbie]

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

[JohnBFisher]

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.

[bdonahueweedman]

disregard