new thread from I QUIT THREAD

Guest · Post by **Guest** » Wed Jan 23, 2008 4:02 pm

Hi. I'm the original poster from the I QUIT THREAD.
I wanted to post my experience with the medical supplier that provided me with the cpap and mask.
I have struggled with this for months in so many ways, I'm completely uncomfortable and embarassed about the whole situation.
When I posted the I QUIT THREAD I was really trying to reach out for help and lucky enough to find many people here that really gave me a lot of support and encouraged me to try again with the cpap and the mask.
Last week I talked to someone at the sleep center who told me that I should come in and maybe talk about my experience and discomfort. I went to that person today and she ultimately referred me to the med supply company because the rep could go further into detail about the masks and just the whole situation in general. I had recently gotten another mask--something like the liberty mask--anyway at the med supply company they didn't have the time to help me with the mask and the secretary was kind of cold to me about it, in addition to that I had to wait a week because the respitory rep was on vacation. The mask I have leaks and is very uncomfortable. I stopped there this afternoon and no one saw me go in and sit at the desk where the cpap masks are tried on, etc. It's an office full of cubicles and they were talking about ME. I mean they were really ripping on ME... The didn't know I was there and I heard EVERYTHING THAT THEY SAID. I stood up and walked over to the cubicle where 3 of the employees were saying some pretty negative, nasty things about me. I said "I'm here, and I heard everything you said." Then I walked out and got in my car and left. I called the lady at the sleep center back and told her of my experience and she was appalled. I couldn't believe it!!!! I also told her that enough was enough and that I quit all together.
I just had to record this experience, because now I have a really bad attitude about the whole thing and I have to say quite honestly that I don't care about the whole situation any longer. I appreciate all the help that was so generously given here. I appreciate it. I really do. But with this experience in my head, to add to the already negative connotation. I really do QUIT.

Sleepy Dog Lover · Post by **Sleepy Dog Lover** » Wed Jan 23, 2008 4:36 pm

Don't let a very bad DME make your decision for you. Take the power back for yourself. Find another DME that your insurance deals with. I will say that sneaking into the office was not a good thing to do, however, it is done, and those people were violating HIPPA by even discussing your case. Tell your insurance company and your state insurance board about your experience.

Unfortunately, in this day and age, YOU have to take control of your health care. Participate here in the trade a mask, get a mask. Look at CPAPAuction.com to see if you can get another mask at a lower price. Ask here to give you tips on adjusting a mask right. Like I said, people will help you, and you will probably get better advice here than at your DME, especially the one that you were assigned. There is more than one DME, and your was totally unprofessional.

Barks1 · Post by **Barks1** » Wed Jan 23, 2008 4:38 pm

Guest you do seen to have a lot of trouble don't you.
I take it you have had issues like this most of your life.

I really don't know how to help you as I can't say I have ever been in your situation before. Maybe just hang in there and try another company.

Sleepy Dog Lover · Post by **Sleepy Dog Lover** » Wed Jan 23, 2008 4:47 pm

I do have to add to my previous post that it seems like you are looking for excuses and validation to quit. If that is what you want, you won't find it here. Its not easy, sleeping with a thing on your face is not fun. But we aren't going to help you quit. We all rely on our xpaps to keep us healthy and to live.

sleepycarol · Post by **sleepycarol** » Wed Jan 23, 2008 4:57 pm

Okay -- so they were talking about you -- you have the POWER to fire them. If your cpap is on rental you can return it if you haven't had it long and go to another DME. Contact your insurance company and explain why you want to switch DME.

I get very stubborn and when something like this happens to me I HAVE TO SHOW THEM WHO IS BOSS!! It sure ain't them!!! No way would I give them the satisfaction of proving them right.

Having sleep apnea does not have the stigma attached as many other diseases. In my opinion we have a lot to be thankful for that there is help for those of us that suffer from it!!! If there were only the surgery route I probably would be running in the other direction. I CAN tolerate the cpap over the alternatives.

Do what you want -- grow up -- take some responsibility for your OWN health!!! If you STOP using cpap don't expect the government to take care of you if you suffer from a stroke, heart attack, or other serious illness.

track · Post by **track** » Wed Jan 23, 2008 5:29 pm

What a friggen baby.....Too many good people that are making an honest effort to waste time on the likes of you.

JeffH · Post by **JeffH** » Wed Jan 23, 2008 6:35 pm

Better do some growing up fast, because not using CPAP is a death penalty. If you are going to let your false pride and ego kill you, (and it is YOU that is the problem, not them) then go ahead and quit.....but please quit posting here.

Some people's kids.....

JeffH

jsmythe · Post by **jsmythe** » Wed Jan 23, 2008 7:38 pm

I'm sorry, forgive me if I am wrong, but I felt like this poster was a HOAX from the beginning. I still do. Everything that he has said does not sound like a true cpap patient. Especially the last post. Something just aint right. I will eat crow if I am wrong, let me know. If he is real, why not register, if he is going to all the trouble of posting in the first place?

goose · Post by **goose** » Wed Jan 23, 2008 7:47 pm

"Mommy....They're talking about me....Whaaaaaaaaa!!!!"
"Mommy....They don't like me....Whaaaaaaa!!!!"......

They the only DME in town?? Doubt it....FIRE THEM!!!!
What they did was not only unprofessional, it was illegal under present law. BUST THEM!!!!
Somehow though, I don't think they're the real problem. You gots issues!!!!!!

You think this sh** is easy??? Think again. Just like getting old, xPAP isn't for wimps.....

If you're really going to quit, then quit, but go away. You're wasting our time here because we don't deal with quitters.

Sheesh.....
goose

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CPAPopedia Keywords Contained In This Post (Click For Definition): DME

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CPAPopedia Keywords Contained In This Post (Click For Definition): DME

sharon1965 · Post by **sharon1965** » Wed Jan 23, 2008 7:57 pm

well i'm sure it must have really sucked to hear them talking about you, but honestly in the great scheme of things WHO CARES?!
you would let something like that get in the way of a treatment that could save your life? if you heard oncology nurses talking about you would you just take your cancerous tumour and go home? if you were diabetic and you heard medical personnel talking about you would you just go home and slip into a diabetic coma? (just think of what you might hear then! )
seriously, do the smart thing, get a grip on yourself and take control of the situation

Restless1 · Post by **Restless1** » Wed Jan 23, 2008 8:44 pm

Hi Guest,
I understand your frustation. I was abandoned by both the sleep lab and the pulmonologist. When I complained to my DME that my eyes hurt so bad I couldn't wear my contacts, all she said was tie a knee-high around your head. She didn't suggest that I come in so she could help me. As I later discovered by myself, she had measured me as a small ComfortGel mask, but had given me a medium. She was nasty when I asked about a Swift mask.

I couldn't get anyone to talk to me and was ready to put the cpap machine in my closet, but I didn't feel it was the right thing to do. Besides I had paid $380 for the equipment; that's a lot of money to waste. I turned to the Internet and found this forum. I explained my problem and people suggested solutions. E.G., someone suggested how to take the smell out of the ComfortGel mask; and Snoredog and Wulfman suggested that my pressure should be 9, which turned out to be correct.

I don't think that you sneaked into the DME's office as someone said. If I wanted a change in masks, I would go to the mask desk too to look around while I waited for someone to see me. However, at my DME's office, the staff are sequestered behind closed doors so we cannot overhear them.

I don't know anything about the Libery mask, but probably if you do a search above on it, you may find someone's posting about the Liberty's leaks. If you want a different mask and do not want to go back to the DME or try a new DME, you can do what I did. I went to cpap.com and bought my own mask. In fact, I bought 3 masks in the last 6 months. My insurance reimbursed me 80% for one of the masks even though it had not been 6 months as my DME had told me. I was reimbursed from my Flex account for the other 2 masks. Or you can go to http://www.cpapauction.com to see if there are any masks there you would like to try.

In addition, I find a lot of information just by reading the threads on the message board.

In summary, I encourage you not to give up yet. It is frustrating especially when you have no support; however, if you keep at it, it will get better. I am glad you came back to this forum.

Irene

mindy · Post by **mindy** » Wed Jan 23, 2008 8:50 pm

Hey folks (not you, guest),

I think guest is either a sham or is craving attention and as long as we all continue to post he/she will keep getting his/her jollies. Best I think we can do for this person is to stop posting to this thread.

m

Goofproof · Post by **Goofproof** » Wed Jan 23, 2008 8:54 pm

It's hard to quit being a natural born quiter, but this takes the cake, You quit your own "I Quit" thread. Sounds like a lifetime of practice. Jim

Guest · Post by **Guest** » Wed Jan 23, 2008 9:38 pm

Go ahead and quit. No one will stop you. However you need to be aware that untreated can lead to much more medically and then again you could die.

Fire your DME and find another. There illegal conduct is grounds alone. Either find another local DME that will accept your insurance or go to CPAP.com and then billmyinsurance.com. And many of the RT's at the national DME's are about as knowledgeable about xPAP as you. Also if it was me, I would call their regional HQ and complain. Keep going up the chain until you get someone willing to listen.

Most of all, you need to overcome some issues.

Allen

WearyOne · Post by **WearyOne** » Wed Jan 23, 2008 9:57 pm

I'm not a discerning person when it comes to figuring out if "guest" posts are real or not. The way I look at it is if the posts are real, then hopefully the person is getting some good information in our responses. And if a post(s) ends up being someone just trying to yank our collective chains, whatever helpful information we did post in response could be helping someone else that's lurking around the forum looking for answers and help, but hasn't posted. Just my take on it.

So, for either the OP, or anyone else, yeah, I can understand your desire to quit---quit the DME, but not quit CPAP. When you're treated so poorly, write a letter to the idiots and let them know that you plan to tell every doctor, every sleep center, every person you know about the severely unprofessional manner in which they conduct business, etc. Then find another DME. If that one isn't good, find another. Buy online, and learn to use the machine/mask from your sleep center and this forum. Heck, I had one instruction session and mask fitting when I got my machine, and another fitting for the second mask I got from my DME, and that was it. The rest I ordered over the phone and the DME sent by FedEx (or I bought them online)! I guess I could have asked to come and be fitted, etc., but the point is, it can be done without DME assistance.

This forum can be a wealth of help, information, and support. One just has to be willing to accept it, and keep plugging away until things start falling into place, no matter how long it takes.

As others have said, everyone needs to take control of his or her own health.

Pam

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, DME

Mask

Additional Comments: Equipment isn't correct, S9 ASV w/H5i

Mask	Humidifier

Mask

Additional Comments: Strictly a side sleeper