need advice sorry long

Hi, I finally had my appt. yesterday at the sleep clinic to get my auto pap. It was disappointing. I evidently only get to use the auto pap for 30-45 days, then I get a straight cpap. I asked about c-flex{I told him I had been reading on here and had a little knowledge, which can be a dangerous thing} he said there is absolutely no significant clinical difference using c flex. I commented that patient compliance would be significant. I also thought that I would be able to try different masks on. Nope. Just hooked me up to the one that fits over your nose, and has a pad on your forehead. Tried it for about 5 min. He asked if there were any leaks I felt, I said, No. Then he opened another one which I thought would be a different style to try, nope, this one was brand new out of the pkg. MINE. Also, asked about the ramping, NOPE. Again, no clinical significance. Also, I don't think that my apnea is significant, I have so many issues since the accident. I also told him that I wear a bite splint since my mom died, because I grind my teeth, doesn't matter. Told him I am by nature a mouth breather, and especially now since I have the splint, it seperates your jaw, my mouth is open!! How do I keep my mouth shut with the splint and because I am a mouth breather? He said to just try it. The numbers for me were 6 apnea on my tummy, 28 on my back. Now since the accident I have upper cercical instability and my Neuro wants me off my tummy{which is how I have slept since the accident, because otherwise on my back I wake up choking} for 9 years!! Hard to change so many things!!! HELP!!!! So when I get the straight cpap, won't the pressure be high enough for me to sleep on my back, and then stay that high when I sleep on my tummy, with all that air blowing down my throat when I don't need it? I just don't get it all. I was disappointed and my husband and I left without the machine, telling the tech we would come back next week. I told my husband I was hoping you guys would answer all my questions, cause I just don't know what to do. I'm so sorry this is so long, but I am a complicated patient with many issues including vertigo, and I don't know if I have the energy for this. Please respond to as much as possible in my post. Thank you all, you're all a God send. LV

Well first off, fire your Doc. No clinical difference... at that point you should have had him strap the mask on and see if there is any difference. See if he will give you a script and get a machine from cpap.com

Wow...and they wonder why compliance rates are so low. Sheesh.

LBV, if you have insurance, check to see if there are any other medical supplies providers your insurance deals with. You don't have to go to the "DME" (durable medical equipment provider) that the sleep clinic or the sleep doctor recommend. You may be able to pick and choose who you do business with.

You might also want to crunch the numbers (deductible, co-pays, etc.) and simply bypass the local DMEs altogether, doing as Mike suggests...buying online. It can give you great satisfaction to actually pick out the machine you want, the mask you want and know that you have not put one penny of yours in the pocket of a place that employs a guy like the one who gave you such poor advice.

If you decide to select a machine from cpap.com, for example, all you need is one word - cpap - on the prescription, to choose whatever machine you want, cpap, auto-titrating cpap (autopap), or bi-level (bipap).

Any number of people on this board will help you every way possible, if you choose to take a proactive role in your own treatment. With your extra health problems, you sure need xpap treatment that is as comfortable as possible for you, as well as effective.

The ResMed Ultra Mirage FF mask is probably going to be your best bet, if you have to sleep with a splint keeping your mouth open slightly. That mask will cover mouth and nose, so you can breathe either way and it won't matter if air comes out your mouth.

Many people whose tongues form a natural seal within the mouth are able to not have mouth air leaks even with mouth slightly open, so you might want to give other types of masks a try too, any time your insurance will cover buying another. Activa and Swift are good ones. Breeze is my favorite, but not the best interface for sleeping on one's back. Great for side sleeping and tummy sleeping if you keep your head turned to the side.

Good luck and keep digging into the posts here. The more you educate yourself, as you've already started doing, the better armed you'll be to deal with UNhelpful salespeople/techs/whateverhewas like the one you ran into.

It's going to get better.

Hello LBV, Welcome aboard.

I'm Chris. I tell it like I see it. Whoever is telling you this stuff is full of

BULLSH#$.

Just ask your Doc for a RX for a cpap . Thats all. Then buy a REMstar Auto with c-flex online from cpap.com . The Rx doesn't need to say auto or a brand . Just cpap.

I promise you you will be happy with cpap.com .Order tonight and you'll be using it in a few days.

Stay with your DME and you will be posting a horror story about how you AND your insurance got ripped off in a month when the bills arrive.

AND, I will say I told you so.

Please don't be a victim like so many before you. You have the advantage of the knowledge paid for at their expense.

Remember this. AUTO PAPS RULE

Beware of the EVIL DMEs.

Cheers,

Chris

Not you MelMel, Christine, Automatic . Your nice

I started on the straight CPAP machine. After talking to our wise friends here, I discovered other options that would mean more comfort for me during the night.

I then went back to DME and said "I can't exhale against the pressure" tell the MD about C-Flex and then tell him/her that you want an APAP because this is your body, your nights sleep and you want the most comfortable treatment available. How can someone argue against "subjective" symptoms. Its a term in nursing. Everyone can tolerate a certain amount of pain, some more, some less. Same with CPAP/APAP.

It is completely subjective--meaning if you can't tolerate it and you are the one who is suppose to be receiving the treatment--ASK NICELY FIRST, THEN DEMAND WHAT YOU WANT.

REMEMBER YOUR BODY, YOUR SLEEP, YOUR LIFE. YOU ARE THE ONE WHO HAS TO LIVE WITH THIS MACHINE/MASK -- GET WHAT YOU WANT, DON'T SETTLE FOR LESS!

YOU ARE A CONSUMER!

We will be here for you!!

LBV,

Sorry to hear you've joined the large crowd of apnea sufferers who have been treated like cattle by their Doc/DME.

Regarding the 30-45 day trial using auto-pap, this is what I learned last night directly from the Respironics Rep.

CPAP is the "gold standard" and to be prescribed in ALL cases except where the patient has a medical condition requiring other treatment or the patient cannot tolerate the cpap.

BIPAP is the next machine to be prescribed (yes that's right, BIPAP) I questioned why if a patient can't tolerate the pressure of a cpap why would a BIPAP be any better?

APAP is to be used under two conditions. One, if the patient could not tolerate CPAP or BIPAP. Two, on a temporary basis to confirm pressure requirements.


Very interesting!

Hi LBV,

You're too nice. Stop apologizing and get what's best for you! When the lights go out you are the only one behind the mask, it's your life and you need to get a good night's sleep.

After reading the posts on this forum you must realize suppliers are in business to make a buck first while trying to inch you up the ladder to better health. They want to make another buck with every step you take!

Do what I did. Reasearch as much as you can then get the most up to date equipment available. Make a decision on the unit & mask you want, print out the description on the CPAP.COM web site. Take it to your doctor and say "that's what I want - please refer me to a DME who can supply it at the equivalent price".

You have to take control of your own health and it starts with your own reaearch and standing your ground when you know what is best for you. Get whatever opinions you want but in the end, it must be your decision.

It's Friday night and I've had a couple of rum & diet Pepsi's so am rambling a little - but I do wish you all the best and success in resolving this issue. Now I think I'll curl up with my sleep partner - Remstar Auto with C-flex and Activa mask. Since January she has been whispering quietly in my nose while I drift off to dreamland!

Just do it!!!

Bob F

unclebob wrote:Hi LBV,

Do what I did. Reasearch as much as you can then get the most up to date equipment available. Make a decision on the unit & mask you want, print out the description on the CPAP.COM web site. Take it to your doctor and say "that's what I want - please refer me to a DME who can supply it at the equivalent price".

Bob F

If you found a DME supplier who sold to you at the cpap.com price, I'm surprised. Whatever your opinion of any DME company, they do operate in a different environment than an internet site. They have people that can physically visit your location or where you can be at their location. They take insurance so they have to have more office staff to handle those claims. They wait for their money much longer than cpap.com. Many smaller locations will pay more for their products than cpap.com does. In other words, they have a business to run and have to cover their costs.

Have you ever taken a printout from Amazon to a local bookstore and said I'll buy this book if you match the Amazon price? I've not tried it but I don't think you would get very far. That Borders or Waldenbooks or local bookstore has costs that they have to cover and/or a different profit margin as well.

As I've said before, I have worked mostly with GOOD DME companies and I contend that the "All DME's are evil" is wrong. Perhaps MANY are evil, but not all. But we do have to recognize that they operate in a different environment. Both types of companies are in the business to make a profit.

I agree that you should get the equipment you want and that you should find a supplier that you are comfortable working with - whether that is cpap.com, another internet supplier or one of "those" DME's.

I agree with Dave that not ALL DMEs are evil... but a significant number of them are motivated by profit, and either don't care enough to learn about what makes for good treatment, or don't care enough to apply what they know.

Your best weapons are to read through these posts and find out all of the information you can get and then go back and have a spine.

They are doctors and DME suppliers, not gods among men. If you went to a mechanic because your muffler had fallen off the car, and the mechanic said "No, what your car really needs is a new water pump to solve the problems" you'd go to a different mechanic. Don't let 'em sell you a water pump because they haven't got any mufflers in stock.

Liam, who had so much rainout last night, he felt like he'd ordered a water pump.

Depends on your definition of Evil. IF you are taking about DME's just being worrying about profits and less about patient care, then you have a lot of DME's in that bucket.

Personally I also blame the insurance companies for ALLOWING the actions of bad DME's to continue. We all say that we are the consumers, but really we are the third party consumer in a lot of DME's mind. (for those of us with insurance) What I mean by this, is that they are concerned about getting reimbursement, not about making you happy. They just have to do what the insurance company requires to get reimbursement. The problem that I have experienced is that the insurance companies do very little to ensure you are happy, they have their contract to cover you and that is it.

I think that if CPAP users as a whole could pressure not only the DME's but ALSO our insurance companies, there would be changes made. Affect the money, and you effect change.

Hi again LBV,

We all make mistakes and in my previous post I should not have included the words " at the equivalent price".

Dave picked up on that and sent the thread back to the good vs evil DME issue. There are obviously both. My point is that you need to take as much control of the process as you can through your own research and try to decide what equipment you want. This is not brain surgery and for the most part you will not go too far wrong if you follow the advice of experienced users on this forum. Thr major manufacturers all make good xPAP units that will treat your condition, otherwise they would not be in business. Masks are a different story and are more personalized to meet your individual requirements. This is especially important for you as you have your own special issues.

As far as the xPAP unit goes I strongly believe you should opt for the most up to date technology you can get. Right now that means autopap. Just forget about CPAP - nobody goes out and buys a black and white TV anymore. In addition, Respironics has a C-flex feature which can mean a big difference in compliance and thus treatment. That's today, and if you wait untill next year there will be something better on the market. Do you want to wait or not because it goes on and on.

Having selected the equipment, you now have two other issues - price which may involve an insurance company (and maybe more issues you need to sort out) and service.

Service can be a very important issue. You can get a lot of answers on this forum but if you need hands on, that's a different story. You need to consider location convenience, repair and equipment service, loaners for downtime etc. All of these cost money which is why a local DME's prices are higher than a no frills supplier.

The good vs evil DME's seems to center a lot on how they steer the client toward the equipment they want to sell meaning higher profit for them. The best you can do is take this step out of the equation by telling them what you want and then talk price and service.

You sometimes see a lot of emotion in the posts here because people really have strong and valid opinions. Just stay focused and try not to be overwhelmed, this is a business decision with your better health and well being at stake.

All the best,

Bob F

There is more to the Evil DME than just price. In my case Lin(dont)care didn't bother to even read the sleep study that they insisted they had to have!! (In the conclusion section it stated no nasal mask, ff only) Yes there are probably some good DME's out there, just like there are probably some good lawyers out there, but the problem is that there are a LOT of really bad ones that give the good ones a bad rep. So, the question ends up being, is bad service better than no service....


(No lawyers or DME's were actually harmed in this post...)

Mikesus wrote:(No lawyers or DME's were actually harmed in this post...)

Well, darn.


Liam, who actually has some lawyer friends, but still couldn't resist.

Liam1965 wrote:

Mikesus wrote:(No lawyers or DME's were actually harmed in this post...)

Well, darn.


Liam, who actually has some lawyer friends, but still couldn't resist.

Well I guess we could change that, got any in mind?

Thank you all so much for your replies. Actually, I do have a backbone, hence, walking out of the appt. with no machine in hand. I actually told him I had to think about it. He promptly closed up his book, stood up and walked us out. It sounds like he was crude, but his next appt. was waiting, too. So I told him I would get back with him. I called the sleep lab today and expressed my concern over trying different masks, and she said of course I could. She asked if I was willing to see the same tech again, or if I needed a new one. I told her "David" was ok, as long as he knows now that I am in the drivers seat, that I am going to try different masks, and pick the one I like. He truly wasn't evil, just going thru the motions that I am sure he has been through a thousand times, but I told him I am not your "average" pt. walking thru the door, I have various issues that need to be addressed. I guess it seems easy to talk myself right out of it completely. I talked to my ENT doc today and he said to give it a try, that any # over 20, requires tx, so I will give it a chance, with a positive attitude, I might add. Anything that could help me feel better is worth my time and effort. Thanks again, I'll keep reading and keep asking questions. LV