frustrated with DME

[upallnight67]

I am very frustrated with everything about my sleep apnea right now. I am newly diagnosed with central and obstructive sleep apnea. Started on bi-pap in July with a setting of 17 and 8. I have had such a hard time with getting used to machine and was still not getting the rest I needed. Had a Pulse oximetry finally in oct which showed a desaturation on the machine of 73. According to the report I qualify for 02 at night per medicare guidelines. Saw my pulmonologist who set up the third sleep study for me. They titrated my setting again on Oct 18, 2012 and told me they need to change the settings to 27 and 14 as I had a NREM AHI of 85 on my current bipap setting of 17 and 8. I did the study on a thursday and the next Mon my DME provider came to adjust my machine. He then realized my bi-pap does not go up to the setting required so he tells me they will have to order another machine and in the meantime just continue using my current setting of 17 and 8. Well it is now Nov 2 and my DME is telling me it still may be another couple weeks before they get my new machine in the meantime I continue to feel horrible and fall asleep at work. Really thinking about firing my DME but fear that would delay things further. I have only been on bi-pap since July and hate to sound whiny but I just feel so tired all the time and only get excuses when I talk with someone at the DME store. I dont have a lot of support with family or co-workers (I work in the medical field) in my trying to use a bi-pap and the frustrations of not getting the sleep I need . Does it ever get any better?

[Lizistired]

Have you called your Doc's office about the delay? Maybe they will get ticked and coordinate with another DME or light a fire under the current one. You could get your paperwork from them and shop for a new DME that has the machine you need. Raise a little hell. It can't hurt.

[chunkyfrog]

Contact Medicare management directly.
They probably have no idea these morons have dropped the ball.

[2Tim215]

I was just curious, does your current machine go up to 20? If so why don't you set that to 7 to 20? This might bring you some relief until you get things straightened out. Just an idea hope it helps!

[mcdover]

I am very frustrated with everything about my sleep apnea right now. I am newly diagnosed with central and obstructive sleep apnea. Started on bi-pap in July with a setting of 17 and 8. I have had such a hard time with getting used to machine and was still not getting the rest I needed. Had a Pulse oximetry finally in oct which showed a desaturation on the machine of 73. According to the report I qualify for 02 at night per medicare guidelines. Saw my pulmonologist who set up the third sleep study for me. They titrated my setting again on Oct 18, 2012 and told me they need to change the settings to 27 and 14 as I had a NREM AHI of 85 on my current bipap setting of 17 and 8. I did the study on a thursday and the next Mon my DME provider came to adjust my machine. He then realized my bi-pap does not go up to the setting required so he tells me they will have to order another machine and in the meantime just continue using my current setting of 17 and 8. Well it is now Nov 2 and my DME is telling me it still may be another couple weeks before they get my new machine in the meantime I continue to feel horrible and fall asleep at work. Really thinking about firing my DME but fear that would delay things further. I have only been on bi-pap since July and hate to sound whiny but I just feel so tired all the time and only get excuses when I talk with someone at the DME store. I dont have a lot of support with family or co-workers (I work in the medical field) in my trying to use a bi-pap and the frustrations of not getting the sleep I need . Does it ever get any better?

If I were you, I would get a second opinion from another doctor/sleep lab ASAP. BiPAP at 27/14 is ridiculous! Sounds like somebody doesn't know what they're doing.

To give you an example, more than once in my career I've had someone come into my office with a prescription for cpap @ 20+cmH20. Why is this a problem? CPAP doesn't go past 20cm! I would have to call the lab and talk to the manager, the manager would have to call the doc, then the patient and get them back in the lab for another study. I haven't seen it in a few years now because most labs now have correct protocols in place and I guess the newbie techs are better trained now.

What raises a HUGE red flag to me with your scenario is not just the high pressure, it's the extreme difference between IPAP and EPAP settings. I have a feeling that you need a Bipap ST or ASV and they are trying to get by with straight bipap. Without seeing your study first hand, I can't say for certain that they are wrong, but I will say this. In all my years of doing this for a living, I've never seen someone with a IPAP/EPAP difference of 13 cmh20.

[lorraineg57]

Have you called your Doc's office about the delay? Maybe they will get ticked and coordinate with another DME or light a fire under the current one. You could get your paperwork from them and shop for a new DME that has the machine you need. Raise a little hell. It can't hurt.

I work for a PCP and will do whatever it takes to get an issue like this addressed. Call your doc, whomever is handling your sleep disorder and give them a sob story. Ask them if they can PLEASE help you get this expedited. Don't call and raise h*ll, this is one of those you'll get more bees with honey scenarios. Ask if it would be possible for the doc to contact the DME directly. (He personally probably won't but should direct staff to.)

Trust me, if someone calls and starts screaming in my ear, I'm not as inclined to go the extra mile for that pt. Someone who calls and explains their issue politely and expresses distress without getting nasty will get much better results.

I'm not thrilled with my dme either (apria) and just posted a thread about them.

[archangle]

We need to know the exact machine you have. What does it say near the display on top of the blower? Take out the water tank, so you don't spilll the water, and look for a number like 650 760, etc. on the bottom of the blower unit.

Sounds like you may need to take charge of your own therapy.

[upallnight67]

Got another machine a Bipap S/T using a phillips respronics comfort gel mask which is leaking like crazy . They are supposed to bring me another mask to try as Im up all night readjusting because any time I move my mask needs readjusted. Makes a lot of noise and I still cant sleep suppose to have levels checked again next month so hoping it gets straightened out soon.

[jencat824]

Is the machine they brought you data capable? If so, you need to get help from the informed folks on this board about what software is compatbile with your machine & get your own data, not wait until next month for lab to check it. I have been on CPAP 12 years, and just recently found this board and learned what a great tool reading your own data can be. It puts you in charge of your own sleep outcome by you being in charge of that tool. If you post the machine name in your profile, the wise ones here can help you to get hooked up with the right software. From what I have seen here SleepHead seems to be the best. I unfortunately cannot use it, the machine I bought required its own software. This time is an opportunity for you to make sure the machine you end up with is data capable and with the best software. If your machine is not data capabile, call your DME & nicely request they get you one that is. I agree with lorraineg57 that you "catch more files with honey'". Good luck & keep us posted.
Jen

[Pugsy]

I commented on machine and software information in your other post about mask at high pressures.

If your machine is set for 27 IPAP then you likely are using the old Legacy series BiPap S/T which uses a smart card and you also need a special card reader. This model machine with the smart card won't work with SleepyHead but I can help you get a software that will work. So I just need to confirm exactly which machine you are using then we can explore software options. The S/T models have full data though...at least what was collected back when those models were available. Some of the new data points won't be available though...like clear airway (central) events or waveform flow graphs.

[jacob006a]

You could try finding a new DME. I fired mine after he stuck me with a S9 Escape. I returned it, but they wouldn't take anything else back. Then they had the nerve to try and bill be me for the escape and the filters. I wrote them a letter back and said that I was not going to pay for what I didn't have and that if they wanted payment for the humidfier, tank etc.. That I wanted an itemized bill which explained each of the charges in detail.

I have a new DME and they are wonderful, including purchasing me the Aloha Mask, I am the only customer that has requested that mask from them.

Best regards

[jeepnham]

Boy do I know your frustration. Turns out there was a lack of communication between Dr, insurance, & DME. I had to take matters into my own hands to a) get the doctors script over to the DME. B) get on the phone with the ins company to get the approval, C) Get the DME to get me my equipment.

The odd thing about the whole situation, I work for the DME where I got my equipment from!!!!!

Call your Dr to see if they (the DME) faxed over the order documents for signatures. Then call the DME to see if the doctor sent the orders (and the script) back, and find out if the ins company is the holdup. My thoughts are if the ins company sees that you have one already, why should they fund another one, would be they're reason for denial.
I'm not sticking up for the DME, I know how things fall thru cracks sometimes. Be your own advocate & start squeeking that wheel!!!!
Keep us updated on your progress, & smile!!!

[stage0]

I have to ask, did you feel any better on the 2nd psg with a setting of 28/14. This is a very wide spread of pressure. I have only titirated someone MAYBE twice at these high and widely spread out pressures. If you are having pure centrals....ask your doctor about getting a timed ASV machine to. It is designed to sense when a central is happinging and adjusts the pressure higher and higher until you start breathing again.