Newbie being jerked around big time

[Tracy1968]

Because of debilitating exhaustion no matter now much sleep I get and heart issues (a-fib and palpitations), a cardiologist suggested I get a sleep study done.

I had a sleep study done at the end of December. I met with a pulmanogist on January 9th for a follow up. He went over the results of my study and indicated while my sleep apnea is very mild, my study indicated numerous "respiratory events" (he said it was like my heart skipping a beat, shooting adrenaline through me and waking me up 20-25 times per hour).

He ordered a second sleep study to get my fitted for a CPAP, etc. which I had done on 1/31. The second test, even though unpleasant (hard bed, noisy room, wearing that mask, etc.), no respiratory events, no snoring, etc. I only got a few hours of sleep that night and woke up tired, but no brain fog.

On January 9, the pulmanologist's office called to say, "We have your CPAP prescription ready. Just let us know which DME you want it faxed to." This started my coming on this site and getting lots of valuable help and advice on calling my insurance, checking coverage, looking at different machines and ratings and finding out pretty much all I needed to get started.

The DME of my choice got all the information faxed to them last week (I faxed what I had and then they requested additional information from the doctor). On Friday, after I contacted my primary care doc's office, a nurse told me she also faxed the info and to touch base with the DME to find out when I could get the equipment.

I still hadn't heard anything so today, I called the DME and asked for the status of my order. The rep said, casually, "Oh yeah. We reviewed your order. Based on the results of the first sleep test, you're not eligible for a CPAP. I almost fell off my chair. Thinking I misheard her, I said, "But the second sleep test showed improvement." She responded by saying in not so many words that there was no reason for me to have the second sleep study done. O-M-G. This is a test I have to pay $1,300 out of pocket for.

The DME rep told me they notified my doctor and it's up to them what to do next.

I just got done crying harder than I've ever cried in my life. I am so far in debt, I can't even tell you. I am so bone-tired when I wake up, most days are spent just trying to get through the day. I'm too tired to read or watch TV, have dizzy spells, visual disturbances (ocular migranes), etc. I am on short term disability from work which is digging me even deeper into a financial hole. Yes, thank god I have it, but hard to celebrate when your check is $670 and your rent is $650. I literally have no money.

For the past three weeks, I've fantasized about waking up rested, going to the gym again, having a social life again, volunteering, you name it. And now it's all gone. Without sounding suicidal (I'm not) but I don't know how to explain to all these medical professionals that I can't go through life just barely existing. I'd rather be dead (and no, I would never say that since their solution would be to put me on anti-depressants).

I don't know what to do with all of this. I am absolutely just beside myself devastated. Beyond the not getting the CPAP part (which maybe I could sell belongings and buy my own), I do NOT understand why a second test was done to the tune of $1,300 on my side and a prescription written and three weeks of going back and forth with the DME to be told sorry you can't have it.

[chunkyfrog]

This sounds like a miscommunication in the doctors office.
Don't give up, but keep bothering them.

[Darth Lady]

Last I looked, they are a DME, not an M.D. (E). Your doctor ordered it; it's their job to shut up and provide it. Tell your doctor's office to tell them so.

The real issue here may be insurance. DME's are basically parasites on insurance companies. They aren't there to serve you, but rather the insurers with which they have contracts. Most insurers have diagnostic criteria that have to be met, like an AHI of over 5, for instance, or they don't want to pay the DME. It's not, after all, like they care about your health . Oh no, they'd much rather pay the in-patient costs of all the damage that gets done. But if you have to borrow the money somehow, do it.

A lot of members here know how to get good gently used equipment pretty inexpensively. Hopefully some of them will chime in here. Many here have done their whole treatment independently of the medical system by helping each other out.

I know it's hard to be at the end of your rope with no one cooperating. Can you find a friend, clergy person, etc. to help you deal with these idiots? Someone to advocate for you? It can be such a help to have some one ELSE do the yelling. Besides, it's easy to stop believing in yourself in the middle of something like this, or to keep up the energy to keep at it, especially when you are so exhausted to begin with.

Another hint: This is a continuation of your first series of posts. It's fine to locate it and add to it; that bumps it back to the top and everyone has a history on which to make suggestions.

Keep at it!

[strigiformes]

Is the DME's problem that your insurance won't cover CPAP because your AHI technically isn't high enough?

You mention the pulmonologist saying your apnea is "very mild" but you're having lots of "respiratory events"...that sounds like you have a "normal" AHI of less than 5, but may have a high RDI from something like RERAs. So the doc thinks you could benefit from CPAP, but the narrow insurance defnition of sleep apnea only looks at your AHI, not taking the RDI into account.

Edit: Ooops, was typing as DL posted! Yeah, that.

[chunkyfrog]

There is also the issue of co-morbidities, of which most heart problems are,
and which would lower the AHI required to qualify for treatment.
Someone may have missed filling in that line, resulting in failure to qualify you for treatment,
(which you need) and might be a tort. (((A tort means somebody could be sued)))

[Tracy1968]

Thanks, everyone.

The DME told me they didn't even bother running the order through (???) because they saw nothing on the initial sleep study that would qualify me for insurance coverage.

The crazy thing? After the first study, the pulmanologist said there was a chance insurance wouldn't accept the second test for me to be fitted with a mask, etc. and in that event, he'd have me to a second initial sleep study (at home) and that way get me approved for a CPAP study and then a CPAP. But the second study was approved by my insurance.

My primary care doctor (who is just a general practice guy) just sent me an email saying he figured I wouldn't be getting a CPAP based on my sleep apnea test results. ????

Okay, let's say for sake of argument that was the case. Why would the pulmanologist have me go through a second test and write me a prescription for a machine? No other treatment options have been discussed. It was "your prescription is ready - we'll fax it to a DME - let's schedule a follow up visit after you've used the machine for a few weeks."

Telling me after the first sleep study that a CPAP is no-go would be one thing. But $1,300 and two months later (while having no other plans for recovery in place) is unforgivable.

I don't have any friends, etc. who can help me with this. I'M the one always helping them. When I tell other people this stuff I get "helpful" advice like, "Oh that sucks. Hang in there." or worse, "Wow, you have really bad luck." and that's as much help as they give. So, again, thank God for this site.

Thanks again to everyone who responded.

I know a friend of a friend of the sleep tech who gave me both tests (a seriously awesome person). I got in touch with her and she gave me the email address of her boss (the head of pulmanology) who she said has a knack for resolving major screw ups. So I'm off to write another novel.

[AMK]

Can you call the pulmanologist's office and ask that very question?

[strigiformes]

Is there a different DME in-network with your insurance that you can use? It's not up to the DME to decide whether or not you need CPAP. Hmpf.

[Tatooed Lady]

I thought "DME" meant Durable Medical Equipment Supplier? WHERE does it say anything about them being trained to do more than hit a few buttons, dial a machine to "prescription," try to rip your head off with a too tight mask, then say "oooh, the machine you want is more expensive/unavailable...here, this brick is data capable."???

[Wulfman...]

I thought "DME" meant Durable Medical Equipment Supplier? WHERE does it say anything about them being trained to do more than hit a few buttons, dial a machine to "prescription," try to rip your head off with a too tight mask, then say "oooh, the machine you want is more expensive/unavailable...here, this brick is data capable."???

No.......Dedicated Monetary Extractors.

My advice is to get the copies of your sleep studies, get the doctor to write you a prescription and then bypass "the system" and purchase out-of-pocket. Odds are you'll be money ahead due to the deductibles, co-pays, etc.
There are numerous places to get the equipment without going through the brick & mortar money-grubbing jerks.


Den

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[Krelvin]

Curious... did you ever get a copy of the final sleep study?

[palerider]

.Dedicated Monetary Extractors.

I *THINK* you meant "Diabolical"

[Wulfman...]

.Dedicated Monetary Extractors.

I *THINK* you meant "Diabolical"

That too. Over the years, I've see MANY variations of that acronym.


Den

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[M'ohms]

I have been through the same thing twice. First with an ASV then with an Oxygen Concentrator. In both cases, the first DME refused to provide it. I reported it back to my doctor and then called my insurance company. They suggested that I use a different DME in network and gave me names of local suppliers. I called around and got both filled with no additional problems. Stick with it. It's a journey and you can handle it one step at a time!

[Greg Riddle]

The dme missed that there was a mask written on my last rx so I don't doubt they could miss anything