Have I Taken "Stupid" to A New High?

[bjdare]

I am so frustrated. As you can see, I have the most basic of basic CPAP machines. I called my DME (Apria) for an upgrade and they said they must have a Doctor's letter saying a data capable machine is medically necessary (I'm into month 2 with Apria). So, I called the next DME (Lincare) on my insurance (Aetna) list. Lincare tells me "Aetna contracts with them for only certain machines" and the ONLY data capable machine they have is the FP Sleep Style 200 and they will have to see IF Aetna will approve this one for me. When I called Aetna - they told me there was no "list" of machines. I relayed this to Lincare who insisted that Aetna misinformed me!!

I'm having a great deal of difficulty with my therapy. Mask leaks, apnea episodes (my husband stayed awake to observe me while sleeping) waking up gasping, etc. My nightly compliance has dropped to 4 hrs from 6.5 I see my Pulmonologist (who runs a sleep clinic) next week - I called his office the first of the month asking them to help me get my machine upgraded so we could figure out what's going on with my therapy and they basicallly blew me off - told me to wait until my appointment. This will be my 2nd appointment with him just asking how I'm doing and regardless of whay I say, telling me to "stick with it". (I also inquired about the possiblity of an APAP and was turned down flat on that one - he doesn't "believe in them" ...whatever that means. )

I'm tired, grumpy and wondering if this (CPAP) is ever NOT so difficult. Do I dare "fire" the pulmonologist and manage my apnea on my own. I have my sleep study & titration reports and a prescription for a CPAP (which I know cpap.com will honor for an APAP). Am I treading into dangerous waters if I take this totally into my own hands? I've only been on therapy since 12/18/08 and it already feels like a lifetime.

I truly appreciate each of you taking the time to respond. Your comments and advice have encouraged me to take my "respiratory welfare into my own hands". I have found so much information, wisdom and support on this site! My M-series APAP is on order, my Pulmologist is about to hear some parting words from me and I'm looking forward to kindly returning my "Plus" to Apria.

I feel strangely liberated! Thanks for helping me to find the courage to make these decisions and take control of my therapy!!

[dsm]

I am so frustrated. As you can see, I have the most basic of basic CPAP machines. I called my DME (Apria) for an upgrade and they said they must have a Doctor's letter saying a data capable machine is medically necessary (I'm into month 2 with Apria). So, I called the next DME (Lincare) on my insurance (Aetna) list. Lincare tells me "Aetna contracts with them for only certain machines" and the ONLY data capable machine they have is the FP Sleep Style 200 and they will have to see IF Aetna will approve this one for me. When I called Aetna - they told me there was no "list" of machines. I relayed this to Lincare who insisted that Aetna misinformed me!!

I'm having a great deal of difficulty with my therapy. Mask leaks, apnea episodes (my husband stayed awake to observe me while sleeping) waking up gasping, etc. My nightly compliance has dropped to 4 hrs from 6.5 I see my Pulmonologist (who runs a sleep clinic) next week - I called his office the first of the month asking them to help me get my machine upgraded so we could figure out what's going on with my therapy and they basicallly blew me off - told me to wait until my appointment. This will be my 2nd appointment with him just asking how I'm doing and regardless of whay I say, telling me to "stick with it". (I also inquired about the possiblity of an APAP and was turned down flat on that one - he doesn't "believe in them" ...whatever that means. )

I'm tired, grumpy and wondering if this (CPAP) is ever NOT so difficult. Do I dare "fire" the pulmonologist and manage my apnea on my own. I have my sleep study & titration reports and a prescription for a CPAP (which I know cpap.com will honor for an APAP). Am I treading into dangerous waters if I take this totally into my own hands? I've only been on therapy since 12/18/08 and it already feels like a lifetime.

bjdare,

I am pretty sure (not 100% though) that the F&P Sleep Style machine isn't 'data capable'. It is possible some DMEs will call a machine that can record 'compliance' (how many hours it was on for) data capable - but, that is useless info to us.

I have used an HC221LE & HC604 & don't recall any of them having any data recording capability.

Good luck on this.

DSM

PS If you have the will to do so, and with help from a place like this - yes you may well need to take your respiratory welfare into your own hands. A big number of us here have done just that and done very well for it.

[cflame1]

bj,
Unless something has changed in the past couple of years... your person at Lincare's feeding you a line of ____ (you fill in the blank). I originally started with Lincare (and have Aetna). They provided a Respironics Remstar Pro 2 (not the M series but the classic). I went then to an auto (also a classic). They didn't have any trouble providing either of them.

I stopped dealing with them because I bought a machine online.

[plr66]

Well BJ, speaking for my own similar experience of frustration with DME stonewalling and lying to me, and wasted money on my first and only 2 appts with a sleep doc who basically grunted and read whether I was a "compliant" child (I have never taken off my mask on any night since starting this journey 7 months ago).....I ditched both DME & sleep doc after the first month. I returned the rental cpap to the DME and bought all the rest of my equipment from cpap.com (all the usual disclaimers) with insurance applying it to my deductible and paying a lesser percentage--still worth it to me to go this route. But I did this only after I had been patiently reading volumes & volumes of threads and folders on this forum, asking a million questions here, and finally feeling I had really educated myself to confidently cut those awful strings and do it with the help of this incredible group of people. I made an appt with my PCP, who upon seeing how incredibly committed I was to my own therapy, gladly wrote Rx's I knowledgeably asked for.

I think an awful lot of us feel pretty ignorant of just about all aspects of OSa when we first step into knowing we have this condition. Don't belittle yourself. Just get determined to get smart about it all; and do trust that this forum will help you figure it all out....including when it appears that you may need to consult a professional! All the best to you. Stick with it. Amazing things begin to happen if you're patient.

[junie]

I know how you feel I have the same machine you do, I hate it I didn't know anything I wish I would have
found this group when I very first got my machine, I did have apria but I fired them, right now I'm saving my money
to buy a better machine cpap.com it's going to take me awhile to do,I'm sorry I just had to get this out.
What is wrong with your mask? why is it leaking? I hope you get everything worked out.

[Catnap]

Same here. There is some kind of "magic code" that enables the DME to see more info, but I don't know if it's just different compliance info or actually useful data. The compliance data (which is available to the user) seems to be just how many hours it's turned on each night. Heck, I'm CONSCIOUS for the on/off part of the data -- how useful is that? NOT. I will be asking the DME next time we talk whether there is real info available by using the secret button, and if so, demanding he tell me how to use it. I'm not a very passive patient, and I definitely wish I'd known about this forum in advance!

[SleepyRose]

Such a familiar tale! My doc said the same thing, the better machine is not medically necessary. I originally had (and still have) the M series Plus.

Im a wimp so rather than being confrontational I bought a used Pro, the software and card and I love it. I wish, as so many others have said, that I had found this site before I started.

I also started on 12/18/08 and with the help of my data machine I have my AHI below 5 and finally have my leaks under control too. Now if I could stop taking the mask off in the middle of the night! Thats my new challenge and it just started. I was sleeping 7-8 even 9 hours a night EVERY night then all of a sudden Im taking the mask off in my sleep!
Ugh, keeps me on my toes I guess.

No, you're not stupid. At all. If you were then we all would be and this would be called the stupid people forum. And its not.

My sleep doc pretty much ignores me and I havent heard from the DME in ages. Fine with me.

[carbonman]

I am so frustrated.I calleinquired about the possiblity of an APAP and was turned down flat on that one - he doesn't "believe in them" ...whatever that means. )

I have my sleep study & titration reports and a prescription for a CPAP (which I know cpap.com will honor for an APAP). Am I treading into dangerous waters if I take this totally into my own hands?

Sounds like you have all the pieces you need...sleep study, RX,
help and support right here.

I suggest you're in dangerous waters if you don't take total control of your therapy.
I AM in total control of my therapy.

It's your life.
It's my life

[RipVW]

I suggest you're in dangerous waters if you don't take total control of your therapy.
I AM in total control of my therapy.

Ditto!

[Lindalrc]

My first contribution. I have found that the ResMed Activa mask has solved a lot of miscellaneous mask fit problems. The extra fold allows straps to be a little bit loose and if the mask gets a leak, I can just poke the leak location with a finger and it almost always seals. It has virtually eliminated constant pulling the mask off the face to re-seat, only to find a new leak somewhere else. The mask IS a bit bigger, but over the course of any given night it is much more comfortable and compliant.

[boston]

i have aetna, i was lucky my first dme gave me a good machine, but at one point i had problems and called aetna and asked about switching dme's.
they told me that was totally up to me, if i did the rental would start over and i would probably have to pay another copay.
if apria wont give you what you want, fire them. go somewhere else.
unfortunatley aetna did tell me they do not reimburse online purchases.
GOOD LUCK

[WearyOne]

Your doctor works for YOU, not the other way around. If you can't get the service, help, etc., you need, fire him or her and find someone else. Goes for DME's, too. I like that.

I really liked my sleep doc, but lately I'm getting extremely irritated at not having my phone calls returned. Haven't been in there (although I should have been) in over a year. Haven't called them in over a year until I called a month ago---no return call. Then called last Thursday stating my family doc's request for an overnight pulse/ox. Called again Monday afternoon when I hadn't heard back. The receptionist (very nice lady) assured me she'd get an answer from him and call me back today (meaning if he wanted to see me before ordering the pulse/ox or if he was just going to go ahead and order it without seeing me first). Well, guess what, no call today either. I'm giving them until tomorrow, maybe Thursday before I call again, which will be a week from the original call. If I can't get some type of answer this week, I'm calling my family doc back for him to order it, as he said to do that if I had trouble getting it from my sleep doc, and will probably fire the current one and see if I can get in where my husband goes.

I know I'm not the only patient he has, but every other doc I have calls me back within 48 hours (or the nurse does), many times the same day, so I don't think I'm asking too much---just call me back or have someone else call me back and tell me what's going on!

Sorry, soapbox of irritation.

Pam

[RT1111]

The F&P model # HC233JCHU can record data.

If you don't like what Aetna pays for you can buy one on your own. Take responsibility for your healthcare

[yorkiemum01]

I too, have Aetna, and my problem is what they 'dont pay', as my plan's policy has a $2500.00 DME
deductible. That being said, I purchased my equiptment outright from a forum member, and my masks on
ebay and cpap.com......so shop around and do take control. You wont regret it.

[country gal]

bjdare,

I started this journey one year ago. My first titration was in March, and the second in April. I got my c-pap in May and was doing lousy. Thanks to this forum I learned that my so called sleep doctor knew less than I did when I went back for my 2 follow up appointments. I proceded to get copy of my studies and brought them to another sleep specialist. He was willing to work with me and changed my c-pap to an auto. I was titrated at 14 but my auto average is 11.5 with an occasional night at 15. Needless to say I am doing much better on the auto. Since I do not have the software yet I only can read the screen to tell my how my nights are. When I asked him to show me the results of my smart card, especially the leak rates since I was having mask issues He just told me that there were no large leaks.

I have now switched to my 3rd sleep Dr. and this one I am going to stay with. She is a winner.

If your not happy with your Dr. find a new one and tell him/her that you are looking for someone to be a partner with you on the journey. Buy your own equipment if you need to, I did, and now I can be in control of my therapy.

Caroline