Update on Dad

[bwexler]

Unfortunately you don't understand how the system was actually set up to work.
You are supposed to pay premiums all your life, while you are working your boss gets to ship in too.
Then when you need care they make it so difficult to get that your blood pressure rises to the point you either have a heart attack or stroke and die. Or you simply give up as your folks have suggested. The system was designed to collect money not pay out money.

Now advocates like you and me are trying to screw everything up and keep some of those old "useless" folks alive and maybe even able to enjoy life.

I have been fighting a battle since September, with 2 different insurance companies. I needed to replace the filter in my O2 concentrator and wanted the insurance to pay for it. It was approved but Crapria did not stock it because it is an older model, and they did not supply the concentrator, so they refused to supply the filter. I finally went to Amazon and bought a 5 pack for $25. A week later I got a response from Humana that they have approved my appeal and I can go out of network to get the filters from a DME, but not Amazon.

This is just the most recent of many fun encounters with Crapria.

By the way some PCPs (mine) belong to a medical group who must approve everything bore it goes to a DME or a specialist. I have had several experiences where the provider was covered by the insurance company but NOT the medical group and therfore was not available to me.

Good luck with your waders and I hope you get this all sorted out while you still have hair. I think it's to late for me.

[BleepingBeauty]

Hi

I feel really bad for you. You have enough on your plate without the added insurance drama.
When things come down for you think about filing a written complaint to Humana and Medicare.

When I had my problem with the DME I had not yet discovered this forum and had no resources other than my sleep doctor who told me to schedule my next appointment after I achieved compliance. The DME respiratory therapist was part of the problem and I did not feel I could work with her. I still needed to learn how to operate the equipment and achieve compliance. I came very close to throwing in the towel before I even started. I sometimes wonder if the lack of DME support is why so many people fail at Cpap.

This forum does a really great job.

Thanks for the sympathy. Where's my cup of tea?

I really do have enough to do without all this crap surrounding the equipment. But I become a bit of a bulldog in situations like this. I'll see how far I get before I start to implode. A written complaint makes sense, when this is over.

I'm very much in agreement with you on DMEs being the primary reason so many people give up and throw the machine in a closet. Each of us needs help in the beginning (a lot of guidance, troubleshooting, some hand-holding, encouragement, etc.) My own DME's RT was totally useless to me early on; in fact, I taught HER more about apnea than she ever knew, thanks to this forum teaching ME what I needed to know. It really was a head-shaking moment, when I realized that I knew way more than she did, and she was supposed to be a trained professional. My sleep doctor was a failure, too, and that didn't help. I credit this forum, alone, with my therapy success; it's been about 7.5 years now, I'm happy to say.

Unfortunately you don't understand how the system was actually set up to work.
You are supposed to pay premiums all your life, while you are working your boss gets to ship in too.
Then when you need care they make it so difficult to get that your blood pressure rises to the point you either have a heart attack or stroke and die. Or you simply give up as your folks have suggested. The system was designed to collect money not pay out money.

Now advocates like you and me are trying to screw everything up and keep some of those old "useless" folks alive and maybe even able to enjoy life.

I have been fighting a battle since September, with 2 different insurance companies. I needed to replace the filter in my O2 concentrator and wanted the insurance to pay for it. It was approved but Crapria did not stock it because it is an older model, and they did not supply the concentrator, so they refused to supply the filter. I finally went to Amazon and bought a 5 pack for $25. A week later I got a response from Humana that they have approved my appeal and I can go out of network to get the filters from a DME, but not Amazon.

This is just the most recent of many fun encounters with Crapria.

By the way some PCPs (mine) belong to a medical group who must approve everything bore it goes to a DME or a specialist. I have had several experiences where the provider was covered by the insurance company but NOT the medical group and therfore was not available to me.

Good luck with your waders and I hope you get this all sorted out while you still have hair. I think it's to late for me.

You're right, of course, about the system. It's my mission in life to (b)uck the system.

Sorry to hear about your own ordeal. I liken insurance companies to devil spawn, and I don't think that's far off. Our healthcare industry is such a mess; none of it should be for-profit, IMO. The primary goal should be to get (or keep) people well, with no profit in the mix; the money skews things terribly. If you're wealthy, you get the best healthcare available; and if you're not, tough shit, just die already.

The biggest obstacle for me, right now, is that the Humana Provider Book is so inaccurate all the way around. As HowKim posted earlier, it's likely that they've padded the listings to make it look better, because the reality is shitty. I guess their goal is to frustrate the user to the point where the average person ends up with high(er) blood pressure and eventually just gives up.

The waders have now been traded out for a full dive suit. Thanks for the support.

[BleepingBeauty]

I was told yesterday by the DME that the supervisor there would call me back. Of course, she hasn't.

As of right now, no less than 28 of the 30-some DME providers in Humana's directory have been contacted (by either me or Humana) in an effort to find someone else to supply Dad's equipment, and not one of them has worked out. Two of the ones I called didn't even answer the phone (at 10:30 on a Tuesday). I've just hung up from Humana (after an hour and 53 minutes on the phone with them - no lie), and the girl that helped me juggle all this mess today is working to get it straightened out. The last time she came back to the phone to speak to me, she unfortunately told me that this awful DME really IS the only one we can use. She had contacted them while I was on hold previously in an attempt to get to the bottom of the problems I'm having with them, and she said they told her they were coming by the house today to pick up the equipment AND that they have another order for a machine for Dad. WTFF is going on with this company???

They told me three days ago that they'd need a prescription from Dad's PC instructing them to pick up the equipment because Dad doesn't need it. And now they're suddenly and magically coming today to get it? AAAAARRRRRGGGGGHHHHH!!!!!

The girl at Humana had me on hold again while she called the DME back to get details on their purported visit today. Before she called them back, I asked her to ask them to bring a Pilairo Q instead of the FitLife that'll now take ten business days for them to get. (I was contacted by another forum member via PM, and she very kindly offered me the Large FitLife she has and doesn't use, so she'll be shipping it to me shortly.) Between the FitLife and the Pilairo (if this dummy DME will even provide it), Dad should be able to use one of them. And if not, I'll buy something else on my own. The less I have to deal with this DME, the better (understatement of this and every other century!).

You can bet your ass I'm going to be writing letters when this is done - to Humana, Medicare, the AG's office, and anyone else who will listen. It's just unreal...

The girl at Humana ended our conversation by transferring me to the same woman at the DME that I spoke with yesterday. She now tells me that Juan (in respiratory there) will return my call today. (Centrals incoming! When I'm dead from holding my breath while waiting for that call to come, please have my organs donated, have me cremated, and put my ashes in a BIOSurn so I can become food for a new tree. TIA )

[howkim]

Hey, stranger! I'm not around the forum that often anymore, but I haven't seen your name here in ages. Nice to "see" you again, and I hope you're doing well. Thanks for chiming in.

I do believe the doc, and it's not surprising that the insurer would pad the book. It's just frustrating as hell to make all these phone calls and get nowhere fast.

Hey. I'm not here much any more, either. Moved to OK last year. Very different from Miami.

[BleepingBeauty]

Hey. I'm not here much any more, either. Moved to OK last year. Very different from Miami.

Yes, I have no doubt that it *is* very different - a different world altogether. Hope you moved there for a good reason (and that you like it), but I can't, personally, think of a reason I'd ever want to live there. Tornadoes? No, tyvm, I'll pass on that. Just the threat of a hurricane while I'm here in FL has me on edge. (I brought my CPAP battery with me, but it only runs my machine for about six hours; I'll let Dad use it if/when needed, as it'll run his machine for four nights.)

~~~~~~~~~~~~~~~~~~~

Recent update on Dad:

The DME is still ridiculous (when I call their main number and messages I leave apparently go nowhere), but I contacted their guy in respiratory last night via text, asking when Dad could expect to receive the Pilairo Q that I asked for (instead of the FitLife that I don't want to wait for). He didn't know anything about my request. Big surprise. But LSS, we had a long conversation where I explained everything that'd been going on, and he was accommodating and apologetic about their call center and advised that I never call them and only deal with him directly. He said their call center employees don't know what they're doing, they're being trained, etc., and I shouldn't rely on them for anything. (I knew that already!)

I told him last night that Dad's nostrils are long and narrow, which is why I asked for the Pilairo; he asked me to send him pictures of Dad's nose, I did, and he agreed with me. Anyway, he offered not only to have the Pilairo Q delivered to us today, but he said the Pilairo is a lousy mask (not very popular, apparently) and that he'd also send me some pillows from other masks that are popular, just to see if they look like they'll fit. He mentioned the Nuance, Swift FX and P10. I asked him about the Breeze XL pillows, and he said he'll try to send those, too. (I don't like the Breeze headgear for Dad, but the XL pillows could be grafted onto another mask and work well.)

He texted me this morning, telling me he has no RTs in this area today to make the delivery, so he's sending the stuff via a courier from Miami so that we don't have to wait anymore. He said last night that he appreciates all the frustration I've had with the company, and he wants to fix things and get Dad some good therapy. So that's a huge bonus, and I'm not so angry or frustrated today.

We'll see how it goes from here. I feel better having someone at this DME that it seems I can count on (operative word being "seems" for the moment, anyway). Oh, I also asked him about replacement HEPA filters, since Respironics recommends changing them monthly and Medicare provides for two per month (in contrast to the original RT telling us to replace it every three months - and to just flick it with my fingernail to clean it in-between changes ). He hasn't responded yet, but we'll see what he says if/when he does...

I'm not ready to breathe a sigh of relief just yet, but I'm hoping that will happen later today.

Oh, and I asked about compliance requirements and who will be handling that (since Dad doesn't have a pulmonologist or sleep doc, just his GP, who hasn't said anything about it), and he told me that the DME will download the data as a courtesy if I'll mail them the card (and get the info to me and/or the doc) if we want that, but that the DME doesn't get paid for doing that. ??? Maybe that's a FL thing? I thought DMEs billed and got paid for every service possible. In any event, I told him I have a smart card slot on the computer, that I'd get the software online , and I'll take care of getting the compliance data to the doctor (if/when she asks for it).

Further update: The DME says the Breeze doesn't come with the XL pillow in the package, so he'll order one for me. He's sending me the L pillow just to see if I think it'll work or if Dad will need the XL.

So now we wait for the courier to arrive. I hope it's not too long, as I'm seriously overdue for that sigh of relief.

[HoseCrusher]

Finally a breath of hope.

Let's see, either the products will arrive, or the courier will get side tracked and will end up drinking Margaretta's at the beach...

[Pugsy]

The Pilairo is far from a "lousy" mask. But it all goes back to one man's treasure is another man's trash.
Unless he has actually used these masks because he uses cpap......you know the drill.

We don't know until we try.

I am pretty darn picky when it comes to nasal pillow masks and while the Pilairo wouldn't make it to the top of my preference list for various reasons...it sure isn't at the bottom of the list because IMHO there are others much less attractive and down further on my preference list.

Of all the nasal pillow masks that I have tried the nasal pillow of the Pilairo is probably the most forgiving for those people with slotted/elongated nostrils. Worth trying for sure...we have lots of forum members using it as their primary mask but of course it does come with that same sticker that all masks come with...YMMV.

[BleepingBeauty]

Finally a breath of hope.

Let's see, either the products will arrive, or the courier will get side tracked and will end up drinking Margaretta's at the beach...

If s/he gets sidetracked by Margarita's, I sure as hell hope there's one waiting for me when I answer the door to accept the mask delivery (and a BIG one, at that)!

The Pilairo is far from a "lousy" mask. But it all goes back to one man's treasure is another man's trash.
Unless he has actually used these masks because he uses cpap......you know the drill.

We don't know until we try.

I am pretty darn picky when it comes to nasal pillow masks and while the Pilairo wouldn't make it to the top of my preference list for various reasons...it sure isn't at the bottom of the list because IMHO there are others much less attractive and down further on my preference list.

Of all the nasal pillow masks that I have tried the nasal pillow of the Pilairo is probably the most forgiving for those people with slotted/elongated nostrils. Worth trying for sure...we have lots of forum members using it as their primary mask but of course it does come with that same sticker that all masks come with...YMMV.

This guy *does* use xPAP, so I find it odd that he'd make statements like, "Someone with a pressure above 15 can't use nasal pillows at all" and tell me that the Pilairo is lousy. As you say, one man's trash... But I got the feeling that his opinion is based solely on how often any mask is requested and sold and has, therefore, become popular. *shrug* As a provider, that makes some sense, since many people obviously like whichever popular mask is "in" at the time, but he should be more open to the fact that everyone's facial structure and tolerance for masks is different, and he shouldn't pooh-pooh any mask that might work for a user he's providing it to.

As users, we all know that what's popular means squat when it comes to our own individual needs. It might work really well for 80% of the people who try it, but it could be completely wrong for us. Or it might not be well-liked by the majority but be perfect for us. So what sells the most doesn't mean anything when it comes to fitting an individual's face.

I'm stoked for Dad to try the Pilairo tonight. C'mon, delivery person. It's almost 3:00 and I'm waiting (impatiently) for both the mask and my Margarita...

[palerider]

Just the threat of a hurricane while I'm here in FL has me on edge.

well, don't worry for now, hurricane season doesn't even start till June 1st

[BleepingBeauty]

Just the threat of a hurricane while I'm here in FL has me on edge.

well, don't worry for now, hurricane season doesn't even start till June 1st

Thanks, I know. It runs through November, I think (or the beginning of that month, anyway). As it stands, I have no idea how long I'll be here... My parents have "hurricane shutters" on the windows, so if there's a threat, it'll be like living in a cave for awhile.

I sometimes wanna kill my mother on days when the sun's shining and I can still go outside. Can you imagine how I'll feel if I'm shut in with her (literally) and unable to use my machine for a few nights?

[palerider]

I sometimes wanna kill my mother on days when the sun's shining and I can still go outside. Can you imagine how I'll feel if I'm shut in with her (literally) and unable to use my machine for a few nights?

well, just push *her* out the door while the storm's blowing it's worst

[BleepingBeauty]

As the day passed and the clock struck 5:00, then 7:00 and then 8:00, I felt a disheartening lump inside and not-so-silently cursed the guy who promised the Pilairo would be delivered today.

The courier arrived at a little after 8:30. Whew! Dad's already in bed (watching a tennis match at the moment), so I'll have to wait until tomorrow to read the mask booklet, see how it goes together, and put it on him to see how it fits. Crossing my fingers...

I'm just so glad it finally arrived. And even if it turns out that the Pilairo isn't the right one, at least I now feel like I'm getting somewhere with this DME. He even wrote on the delivery paperwork that Dad was given the wrong mask at set-up, so the Pilairo will be considered his first mask and, if he needs something else, he can exchange it for another (he's allowed one exchange in the first 30 days).

NOW, I can breathe that sigh of relief. Yay!

[HoseCrusher]

Margarita time!!!

[poppi2]

NOW, I can breathe that sigh of relief. Yay!

While on my PC, I finally can see and understand your avatar. Now your username, avatar and hints of colorfully-worded descriptions of your dad's DME are all tied together.
With tonight's mask delivery, I'm afraid the RT has elevated the DME up out of the jaws of defeat. And we may never hear your true opinion of these guys.
Oh well. Earl
ps, you are to be admired as a devoted daughter.

[BleepingBeauty]

Margarita time!!!

Indeed!

NOW, I can breathe that sigh of relief. Yay!

While on my PC, I finally can see and understand your avatar. Now your username, avatar and hints of colorfully-worded descriptions of your dad's DME are all tied together.
With tonight's mask delivery, I'm afraid the RT has elevated the DME up out of the jaws of defeat. And we may never hear your true opinion of these guys.
Oh well. Earl
ps, you are to be admired as a devoted daughter.

Glad it all makes sense now. I usually try to keep my language here out of the "colorful" category, but this DME really pushed my level of frustration off the charts!

But yes, the guy at the DME has definitely rescued his company (for the moment, anyway) from the danger that can be me. We'll see how it goes from here (with high hopes that they're able to remain in my good graces). I feel like we're at least traveling the same road now.

Thanks for the compliment. As I think I said earlier, I am pretty devoted to Dad (Mom, not so much ), but I'd like to think I'd be doing this for anyone I care about. It's just terrible to realize how vulnerable a noob is when the system can run over them so easily. I felt alone and hopeless before I found the forum and received so much encouragement from people here to get educated and stand up to the bullshit from the DME/sleep doc. Exercising the power I didn't know I had made me feel like a warrior (and it still does), which makes any success that much sweeter. (See? It's all my ulterior motive to make me feel good and has nothing at all to do with Dad getting treatment. Maybe that's where the "Beauty" part of my name comes from. )