I am depressed and hopeless but willing to try... AGAIN!

I am 47 years old. I was diagnosed with sleep apnea in 2005 (?). I had 80 "incidents" an hour, and was told I had moderate/severe sleep apnea. I was given a Respironics M Series Pro machine and I can't remember the type of mask. I purchased the Encore Pro software (approx $300), and found that when the machine was on, the mask was leaking -- all night. My DME was useless in helping me, and I gave up.

In April of 2009, I had a physical, again complaining to my doctor that I was laying in bed all the time, I had no energy and I wanted to get to the bottom of it. I had every test under the sun and all were normal, except, of course, my sleep study which revealed 52 "incidents" per hour. Since I had different insurance than the first time, I was offered another machine. I was told by my DME that the Respironics M Series Plus was a better machine than the M Series Pro, and she suggested that I donate my old machine to someone who couldn't afford one. I agreed and took home what I thought was a better machine, and a Quattro Full Face Mask. (I am a mouth breather.) The Encore program was on my computer and when I tried to open it after all that time, there was an error. No one supported it at the time, and I couldn't get it to work at all. The mask worked much better, didn't seem to leak and was comfortable, but I still felt like I was sleeping worse with the mask than without. I felt no better, and I even think I felt worse. So after a month or two, max, I put it back in the closet, frustrated.

A year ago, my 3-year-old grandson came to live with me and it's a struggle to keep up. Now I am completely tired and depressed, and I know that I need to treat this stupid condition if I want to feel better. I pulled my machine out of the closet and started using it about three weeks ago. Again, I feel worse than when I started. I called the DME lady, and she's supposed to come to my home tomorrow and refit my mask and give me new supplies. Same lady as the last time. I have been able to get a programmer friend of mine to help me with my Encore software and get it reinstalled. I was able to read the card, and the only information it's giving me is whether the machine was used and how long. In doing some research I have found that the Plus does not even record detailed information about apneas and hypopneas!!!! The Pro that I used to have did. I am SO FRUSTRATED! I feel that if I could see whether I am having "incidents" or not, then I could relax and know that eventually it will get better. I was told by the DME people that basically I'm stuck with this machine because the insurance will only pay for one every five years.

ANYWAY..... I have been using it for three solid weeks. I can see that my mask is not leaking with my software, but that's all I can see. The only problem with my mask now is that I'm drooling excessively. I have found that if I cut up a washrag and roll it up and put it in the bottom of my Quattro, it soaks up the drool and it seems a little better.

Now I am wondering if anyone has any sage advice for me when talking to the DME lady when she comes tomorrow to try to get some help with this. The DME people seem clueless, but maybe if I ask the right questions... I don't know. If anyone has any advice for me I would very much appreciate it.

Have you had a sleep study recently? If it's been over a year you may need to be retitrated. Good Luck.

This is same DME lady who told you the Plus was "better" than the Pro so she could sell a new machine and get that profit from the new insurance company? I would be furious and probably could not even be civil. Other than a new mask type she can't offer much.

Is there any chance your finances will allow a purchase of data capable machine? Even a slightly used one out of pocket.
Edit: Do you use the M series humidifier? If so, maybe could find M series APAP or another PRO to use with it and not have the additional cost for the humidifier.

What was your titrated pressure? Have you isolated reason for not using the machine? Mask fit? Can't sleep with it? Are you die hard mouth breather or is there a chance a different type of mask might work for you?

I'm with Pugsy. You're going to trust the lady from the DME who LIED to you and made you trade in the data capable Pro for a dataless brick in the Plus (which, to my knowledge does not have leak data either!). She almost guaranteed your failure last time and you're inviting her to your home to "help" you again??????? You're better off without her! This can't be the only DME in the world!

I agree with Pugsy also that if you can find an M series Pro in good condition, you can use it with your existing humidifier so you don't have to buy a new one. Or, if it's possible in the budget, get a newer data capable machine. People are really happy with the Devilibiss and it's much less expensive than a new Respironics machine.

Remember that you will need a brand new hose, filters, and mask.

And yes, you should get a new sleep study to be sure that you are getting the correct pressure for your needs.

Do everything you can to set yourself up for SUCCESS this time, instead of failure. You've already done that (thanks to the DME!).

It is hard to stand up for oneself when depressed and feeling hopeless, but I hope you can dig deep and do it. I would hold the lady responsible for her misinformation and fully expect her to replace your machine at her (or the company's) expense. She should not be telling you what your insurance won't do when this is not an insurance issue. It's about her company making a wrong right - without excuse. Period. Any attempt to weasel out of it would result in claims filed against their company to the highest level possible.

Once you get a data capable machine and let us know what mask you are using, you'll be able to get tips here to help you make this work. I went thru a very bad period when new and even quit for a bit after a few months. Once I found this place things began to turn around. Hopefully soon you will no longer be feeling depressed and hopeless. Be encouraged.
Kathy

Thanks to all who replied.

Mary Z: Yes, it has been a year since my last study and I have thought about doing another one.

Pugsi and Janknitz: Yes, I am furious with her. I made the appointment for her to come before I got my software fixed and realized that I got a useless (datawise) machine. I realize that she lied and I am anxious to confront her about it, face to face. It really p*sses me off! I have looked around a little and tried to find a used machine, but I can't seem to find one. I guessed that being medical equipment, it can't be resold? Where would I find one? I checked Ebay and don't see any listed. I wondered if I could just buy the Pro and still be able to use the humidifier. So thanks for answering that question. I found one for $346, I believe. Not too bad to feel better, I guess. Finances are tight, but I guess I could put it on a credit card....

My pressure is 8. I am a die-hard mouth breather. I had a deviated septum fixed when I was 17 and then shortly after got hit in the nose in a frisbee game (accident, of course.) I think that deviated it again, as I have never been able to breathe well through my nose. Even awake. Then a year ago I was punched in the nose by my daughter, hence my grandson living with us.... LONG STORY.... My nose was broken again. The Quattro mask seems to fit well and is comfortable. I just feel like I'm fighting with it all night. I am aware that I wake up several times a night because I'm either drooling and that REALLY bothers me, or have a SUPER dry mouth and lips. And then there's the hose that gets in my way. I am getting used to sleeping with it. I bought some aromatherapy stuff that seems to help also. It's slowly getting better, but I am more tired than when I started. And that's the big thing, why fight with the stupid mask if the thing isn't working to resolve the "incidents"? I REALLY wish I could access that information. If I were to get another DME person, there really isn't anything they can do to get me a new machine, either, right? Also, the Plus doesn't register leak information either? I thought the green bar it gives me would indicate if there was a leak... so now I don't even know if it's leaking either? I AM SO P*SSED!
I really am looking forward to chewing her out in person, in my home, on my turf. It will be satisfying, but will not help my situation any.

kteague wrote:It is hard to stand up for oneself when depressed and feeling hopeless, but I hope you can dig deep and do it. I would hold the lady responsible for her misinformation and fully expect her to replace your machine at her (or the company's) expense. She should not be telling you what your insurance won't do when this is not an insurance issue. It's about her company making a wrong right - without excuse. Period. Any attempt to weasel out of it would result in claims filed against their company to the highest level possible.

Once you get a data capable machine and let us know what mask you are using, you'll be able to get tips here to help you make this work. I went thru a very bad period when new and even quit for a bit after a few months. Once I found this place things began to turn around. Hopefully soon you will no longer be feeling depressed and hopeless. Be encouraged.
Kathy

Ditto what Kathy said! That bait and switch they did to you should be reported if they don't replace your machine. I would start with the owner/manager of the DME or the lady's boss or someone in authority there. A data capable machine is essential to successful therapy and you'll find all the help you need here to interpret your data and make mask adjustments. In your present situation I know it's hard but be strong!

I would for sure try to get a data capable machine with that said -- I wouldn't hold my breathe since the machine is a year old and it is going to probably come down to he said / she said and she will probably deny that she told you that the plus was a better machine. There are some good DME's around but they seem to be far and few between.

Look on craigslist, cpapauction (they have some pretty reasonable), and local ads. I recently purchased an m series apap with c-flex with only 14 hours for $150.00 for the complete unit.

If you do buy from cpapauction make sure to get a confirmation that the machine is working correctly as I recently purchased a F & P HC 254 that gives me an E51 error message and the seller hasn't responded to emails. I haven't opened a paypal dispute yet, but may have to.

You may want to try some other masks as well. I find that the F & P 431 is about the only full face mask that works for me. I have tried others and they tend to leak and have issues for me.

Good luck and hope you can work through this difficult time.

Check out secondwind.com too. They clean & check the machines. Craigslisf often has machines but buyer beware.

If Medicare paid for your plus it will be 5 years before they will pay to replace it. Otherwise check with your insurance company. Be sure to read "what you need to know before you meet your DME in my signature so you will be ready for the DME lies.

You can go on CPAP.com website and print out the specs for the plus to show DME that the ONLY data available on the plus is compliance and NO your insurance doesn't care what machine they would have paid for ANY data capable machine.

Lori Dawn,
Just want to make sure my suggestion of standing up for yourself didn't come across as encouraging you to go for the juglar. Start from a place of calm assurance - where one who knows they are right can stand. Approach her with an air of confidence and expectation, and just maybe confrontation and aggression won't even be needed. Expect to get her cooperation (hopefully willingly but unwillingly will work too). Try to accomplish your goals while conserving your mental and physical energy for getting the CPAP usage mastered. Tell her you want to have an honest discussion with her, that you know she gave you wrong information about the machine, and you feel she did it to get a sale. Otherwise, she was poorly trained and her company is responsible. But that either way, you expect them to make this right and you are not willing to take this loss. I think you just might get surprised and find her willing to make this right and avoid the stench that could come from opening this can of worms. Let's hope for the best. And make sure you get a machine you can use with your software.
Kathy

In 2005 the Respironics machines were not M-Series. The, the type called "tank" around here. And, as matter of fact, it was only the Pro II that recorded efficacy (AHI) data. If you told your DME you had a Pro, and she suggested an M-Series plus was better, she may have been doing it naively.

Are you sure though that you were given an M-Series (black) and not a PR S1 (gray) machine? the PR S1 were out and about by 2009.

Tank



M-Series


PR S1

Hi, All,

I just met with my DME lady. She said she was not aware that the M Series Plus did not record AHI information. I said, "Haven't you been trained on this stuff?" She said, "No, who would train me about software?" She said that she would NEVER recommend that someone have software to read their card because "it's too much to worry about." ??? I told her that I need the information for my own satisfaction of knowing that my therapy is working. She said she would talk to her manager and see what she could do. I can't believe, after talking with all of you, that she would say that. I'm going to see what she does and then get ANOTHER DME!!! Not that that will do any good....

Lori Dawn

Lori Dawn wrote:Hi, All,

I just met with my DME lady. She said she was not aware that the M Series Plus did not record AHI information. I said, "Haven't you been trained on this stuff?" She said, "No, who would train me about software?" She said that she would NEVER recommend that someone have software to read their card because "it's too much to worry about." ??? I told her that I need the information for my own satisfaction of knowing that my therapy is working. She said she would talk to her manager and see what she could do. I can't believe, after talking with all of you, that she would say that. I'm going to see what she does and then get ANOTHER DME!!! Not that that will do any good....

Lori Dawn

Every time compare it to being diabetic. people from 5 to 95 check their sugar level and adjust their insulin - something that could kill them if done wrong, this is AIR. You need the same kind of information to keep your treatment going well, if it works for diabetics why not for OSA?

BlackSpinner wrote:

Lori Dawn wrote:Hi, All,

I just met with my DME lady. She said she was not aware that the M Series Plus did not record AHI information. I said, "Haven't you been trained on this stuff?" She said, "No, who would train me about software?" She said that she would NEVER recommend that someone have software to read their card because "it's too much to worry about." ??? I told her that I need the information for my own satisfaction of knowing that my therapy is working. She said she would talk to her manager and see what she could do. I can't believe, after talking with all of you, that she would say that. I'm going to see what she does and then get ANOTHER DME!!! Not that that will do any good....

Lori Dawn

Every time compare it to being diabetic. people from 5 to 95 check their sugar level and adjust their insulin - something that could kill them if done wrong, this is AIR. You need the same kind of information to keep your treatment going well, if it works for diabetics why not for OSA?

Oh... I can believe she said that LOL. At my first meeting with my DME, I asked him if my machine was data-capable. He said "yes, but you don't need to know about any of that, you won't have access to it anyway"

Mwahhhhhh-Ha-Ha..... fortunately I read a lot here before meeting the DME, so had an idea of what I needed, and didn't bother to tell him I HAD access to the clinician's manual and software already.

They would rather treat us like mushrooms, obviously.

Cheers,
xena

UPDATE:

After I talked to the DME lady, I was telling my husband about the conversation with her. I mentioned that she had said that I didn't need to see my numbers, I just needed to comply. I told her that I needed to see my numbers in order to comply. At one point she told me that I needed to go to the doctor and get on an anti-anxiety medication. That made him soooo mad, that he called her supervisor and asked her, When did she get her Ph.D.? Maybe we should just bypass the doctor altogether.... The supervisor was very nice and told me that was inappropriate for her to say. Since we had her on the phone anyway, we went on to tell her the situation with my machine. She said she would do everything in her power to get me another Pro. That I had a right to be involved in my treatment. She was very nice and we're hopeful that she will, 1) have a talk with her employee; and 2) that she will get me another Pro. We'll see what happens.