New Member - Hello! [how long before considering adjustments?]

[skiajl6297]

Redacted sleep study reports.

https://drive.google.com/file/d/0ByrmpG2...p=drivesdk

[Sleeprider]

The last two closeup charts from 9/29 are disturbing. At 0143 we see a long CA with at least 50 seconds of duration that ends in two small flow limited breaths, followed by a flagged CA that takes the duration of this event out to 1-1/2 minutes. You then get a half-dozen flow limited breaths before the next event. That's terrible and you should be using a recording oximeter which I'm sure will verify your need for supplemental oxygen. The other closeup at 04:47 also features a long CA and many poorly supported breaths.

In my opinion, your long-term goal may be ASV, but your short term ned to to document the severity of oxygen desaturation and getting approval for a supplemental oxygen bleed to be added to your current CPAP. See the Oxygen Bleed Wiki. http://www.apneaboard.com/wiki/index.php..._with_CPAP This may be able to be approved faster than the therapy improvement, and you really need to know the impact of these long breathing pauses. Show these to your doctor and ask him to immediately order an oximetry study. The sleep study you just posted shows no problem with SpO2, but it's not believable with such long and connected events. If that sleep study was without CPAP then you should discuss discontinuing CPAP with your doctor. It clearly makes you worse.

[skiajl6297]

That sleep study was without CPAP. I did it as take home prior to receiving my new machine.

I sent those charts to my sleep doctor, and did ask for an oximetry study. I am nervous to keep using my machine. But I am also nervous to stop using it.

Interestingly, and unrelatedly, the terrible new DME provider I am using accidentally provided me with an oxygen bleed line, I simply lack oxygen to fill it.

I feel like all of this is a bit much for a 38 year old.

Thank you for pointing me towards seeing the doctor with more urgency. I feel like this is serious and urgent, but I am not feeling that concern reciprocated by my healthcare team.

[skiajl6297]

I just had a good appointment with the doctor.  I started with specifics regarding my experience over the last few months.  I shared candid specifics about how I am feeling.  After initial discussion, he documented my detailed specifics regarding all of the issues noted on the "Justifying Advanced PAP" thread linked here often.

• Last night's AHI was 10.3, 100% indicated by machine as central.  0.0% of time was obstructive.
  
• Constant fatigue and feeling unable to handle life duties.
  
• Waking up gasping for breaths
  
• Feeling short of breath
  
• racing pulse
  
• insomnia
  
• poor short term memory, e.g. forgetting whether I took my blood thinners
  
• morning headache
  
• waking up feeling like sleep didn't happen
  
• constant tossing and turning
  
• observed apnea by wife including breathing cessation and panting
  

First we did a pulmonary function test.  Everything came up normal.  My resting blood pressure was elecvated, and my resting pulse was elevated compared to normal.  Next, he ordered a split study.  He indicated this is going to be an insurance fight all the way, but that documenting all of the evidence we have thus far will be beneficial.  I saw him write this stuff down.  So now I wait to hear from him or the sleep lab to see whether insurance picks this one to fight.

He indicated that I should stop PAP therapy today as it is clearly making me worse.   The thought of sleeping without a machine at this point scares me, but also sounds like the right move.  More to come!

[SarcasticDave94]

OK that's good news on someone listening to your concerns. I was eventually told by my pulmonary doctor to cease BPAP for causing more central apnea during my pursuit of the ASV in 2017. It's certainly your choice what action you do, but I had to quit BPAP as it was, in my opinion, a detriment to my health.

[skiajl6297]

I didn't use my machine last night for the first time since I got my Dreamstation. I don't feel any worse for wear today than prior, but I do feel less unwell. Rather than an improvement, it feels like I eliminated an illness, if that makes sense. We will see how I feel after another few nights. I am still tired and foggy and feel unrestored, but I don't feel like an anxious trainwreck at the moment. That is an improvement. Better the devil you know than the devil you don't.

Dave and others - does the Split Study order indicate to you that the end goal is ASV, or is this just going to address getting me on a trial of a BiPAP machine?

For those of you like Dave who have successfully made it to the ASV end goal - have any of you made it there without trying and failing bipap? In other words, are there any things I can share with my doctor or insurance that would help me make a case?

If insurance authorizes the split study, is it wise to discuss the end goal with the therapist doing the testing, e.g. explaining that based on my data, we hope to end up in ASV, given the history of centrals and underlying data? (I like to provide some back story to my medical care providers so they can advocate for me.)

Or are there things that would be found in the split study that would contraindicate bipap? For example, if I have my split study, and during titration, they see centrals, would that contraindicate bipap?

And finally - would anyone recommend calling my insurance carrier prophylactically to discuss my situation? Tell them what is coming, explain my case, make it clear how much I am suffering, etc? In the healthcare industry, it is becoming very clear that only the squeakiest of wheels get the grease, but I don't want to flag myself as some kind of coverage nightmare.

[slowriter]

If insurance authorizes the split study, is it wise to discuss the end goal with the therapist doing the testing, e.g. explaining that based on my data, we hope to end up in ASV, given the history of centrals and underlying data?  (I like to provide some back story to my medical care providers so they can advocate for me.)  

I personally think it's in general wise. Of course, you have to assess for yourself how well your particular tech might respond, and the best approach.

I actually wrote mine (who I knew from first study) a short memo in which I listed my specific goals, which included assessing whether bilevel would better treat my condition (eliminate RERAs, allow REM sleep, etc).

My impulse would be to take that tack more than an explicit "I need an ASV" approach.

[mper6794]

https://youtu.be/TgpiQGuaqzo

This is pretty good!  

Also, sleep doctor just responded in response to my cry for help - looks like I can get in with him sooner, but he isn't approving an ASV device without bipap trial and failure:

Hello Mr. ,
Contact __ and make a follow up appointment with me for sooner then 11/25/19. We are going to have to document all of this and submit a request to [my insurance] to try to get them to approve an in lab CPAP/BIPAP titration. We would not just jump to an ASV device right away prior to BIPAP. If you get your Echo done prior to a follow up with me, please bring those results to your follow up appointment.

Thank You

Hi, skiajl6297

I am newbie, however I am afraid I would totally agree with this doctor in your case: first, the BPAP.

good luck

[slowriter]

https://youtu.be/TgpiQGuaqzo

This is pretty good!  

Also, sleep doctor just responded in response to my cry for help - looks like I can get in with him sooner, but he isn't approving an ASV device without bipap trial and failure:

Hello Mr. ,
Contact __ and make a follow up appointment with me for sooner then 11/25/19. We are going to have to document all of this and submit a request to [my insurance] to try to get them to approve an in lab CPAP/BIPAP titration. We would not just jump to an ASV device right away prior to BIPAP. If you get your Echo done prior to a follow up with me, please bring those results to your follow up appointment.

Thank You

Hi, skiajl6297

I am newbie, however I am afraid I would totally agree with this doctor in your case: first, the BPAP.

good luck

Read post above.

[SarcasticDave94]

I didn't use my machine last night for the first time since I got my Dreamstation.  I don't feel any worse for wear today than prior, but I do feel less unwell.  Rather than an improvement, it feels like I eliminated an illness, if that makes sense.  We will see how I feel after another few nights.  I am still tired and foggy and feel unrestored, but I don't feel like an anxious trainwreck at the moment.  That is an improvement.  Better the devil you know than the devil you don't.

Dave and others - does the Split Study order indicate to you that the end goal is ASV, or is this just going to address getting me on a trial of a BiPAP machine?  

For those of you like Dave who have successfully made it to the ASV end goal - have any of you made it there without trying and failing bipap?  In other words, are there any things I can share with my doctor or insurance that would help me make a case?  

If insurance authorizes the split study, is it wise to discuss the end goal with the therapist doing the testing, e.g. explaining that based on my data, we hope to end up in ASV, given the history of centrals and underlying data?  (I like to provide some back story to my medical care providers so they can advocate for me.)  

Or are there things that would be found in the split study that would contraindicate bipap?  For example, if I have my split study, and during titration, they see centrals, would that contraindicate bipap?

And finally - would anyone recommend calling my insurance carrier prophylactically to discuss my situation?  Tell them what is coming, explain my case, make it clear how much I am suffering, etc?  In the healthcare industry, it is becoming very clear that only the squeakiest of wheels get the grease, but I don't want to flag myself as some kind of coverage nightmare.

Yeah I've been there on the "I'm not using the xPAP today. I actually feel better." IMO indicative of the wrong machine and treatment.

Split study is probably a new sleep study for you where they & you will create data with probably BPAP then split into titration. I'm not sure they have enough data for medical necessity to build an ASV case. Insurance may require the BPAP fail anyway. But I would ask the doctor about ASV; "can ASV testing be included" could be asked/presented. It can't hurt to ask.

Whether it was factual or not, I was told my ASV sleep study was handled by an ASV testing expert.

On insurance: I suppose you can call to determine coverages, how they require handling this, etc. I did with mine.

As for this whole thing, your complaint about CPAP not cutting it counts heavily. Note down how bad you feel, how it's not beneficial, etc. OSCAR data counts as well, but maybe not as much as your specific complaints. Maybe write these down and present these with OSCAR data to the doc.

Be prepared, you might still need BPAP failure. Be ready to fight. Decide on brand; I believe ResMed is the better ASV. However some show better results on Respironics. I can only tell my results speak loud and clear my ASV just works and very well.

If I missed something, don't hesitate to ask.