New BiPAP ST user Vet with complex apnea

[SHatfield]

Got a 32 GB card and transferred the summaries onto it.  Opened OSCAR and it took the information in.  

I'll leave the card in the machine now so it will record the necessary information.  

Thanks for all the help.


Steve

[SHatfield]

I just transferred what I believe is last nights sleep data from my machine to OSCAR.  What do I need to post here for you to see, and how do I do that?


Steve

[Crimson Nape]

Please read the top 2 links in my signature, "OSCAR Chart Organization" and "Attaching Images and Files on Apnea Board".

[SHatfield]

   


First attempt at uploading last nights information. Thanks Crimson Nape and all.
I will say that I have a slight cold and coughed a few times during the night.
I did stop the machine and remove the mask when I went to bathroom twice I think.

[Sleeprider]

The current version of OSCAR does not properly interpret the settings on your machine, and may have some other errors. There is a newer Beta version that you can access as part of the Beta Test Group. You will need to contact bonjour by PM to join that group.

What we see in this chart is that you are probably in ST mode with pressure of 12/8 (IPAP/epap). The machine is delivering a timed breath frequently as shown by the black hash marks above the events, however the pressure support is not adequate to cause a full breath, so you still have hypopnea. Clearly an AHI of nearly 20 events per hour is far from what is considered efficacy, and this confirms you will most likely require ASV. For complex apnea that you have been diagnosed with, you need the adaptive servo ventilator, not ST, but for some bizzare reason, sleep specialists seem determined to prescribe the wrong machine before they will do the right thing and prescribe ASV. You want the Resmed Aircurve 10 ASV. Tell your doctor your therapy is failing with high AHI and extreme discomfort. Ask him to prescribe the ASV immediately or to schedule ASV titration if he will not allow self-titration. If he will not do this, you need to take your diagnosis to your regular physician and explain the situation and obtain the prescription you need. Depending on how good your insurance is, you can then either submit a cliam through your in-network supplier, or buy the Aircurve 10 ASV from Supplier #2. I wish your situation was unique, but there are at least 3 othe members at any time going through the same thing. Here are links to the other two currently going on:
Gurdbonk http://www.apneaboard.com/forums/Thread-...k-Starting
MuzicCity http://www.apneaboard.com/forums/Thread-...tion-1030X
Gurdbonk simply got his doctor to write a script for what he needed and bought the ASV out of pocket. He is doing great. MuzicDity is getting there but struggling like you.

I think it is futile to give you better settings because you are on the wrong machine. The Resmed Sleep Lab Titration Guide describes all the machines, their intended uses and how to titrate settings https://www.resmed.com/us/dam/documents/...er_eng.pdf I want you to read about the ASV and the ST machine and note the conditions they are intended to treat. The ST is intended for COPD, thorasic neuromuscular disorders and obesity hypoventilation. The ASV is intended for central and complex apnea and cheyne-stokes respiration. I think you know what applies to you. Use this information when talking to your doctor..."why did you prescribe ST when I clearly need ASV?"

Your specialist doctor is mis-treating you and you deserve to have the correct device. Find out why you don't, and give serious consideration to finding a competent doctor for central and complex apnea if you are not satisfied with his answer.

[SHatfield]

Thanks Sleeprider.  I currently am under the Veterans Administration medical treatment and my physician prescribed the sleep tests. The home study and sleep titiration was done at the VA hospital in Asheville.  I'm not sure how much demanding I can do but I will surely address it with them.  Thanks again.


Steve

[Sleeprider]

.The VA is a different organization these day. Understand WHY the ST is the wrong machine, then tell the doctor what you need/want and ask for the script. Veterans are often very respectful of authority and taking orders. You need to change mindsets to advocate for the right therapy. We have seen a number of veterans obtain ASV treatment. The best approach is to simply keep your doctor informed that the therapy is ineffective, and request the ASV titration study. There are appeals (decision review) if you can't get where you need to be.

[SHatfield]

.The VA is a different organization these day. Understand WHY the ST is the wrong machine, then tell the doctor what you need/want and ask for the script.  Veterans are often very respectful of authority and taking orders. You need to change mindsets to advocate for  the right therapy.  We have seen a number of veterans obtain ASV treatment. The best approach is to simply keep your doctor informed that the therapy is ineffective, and request the ASV titration study. There are appeals (decision review) if you can't get where you need to be.

Here were my questions to them, 

"First, I have the Philips DreamStation BiPap machine that I've been using since Feb 15th, 2020. I am using the resfit F20 full face mask. 
During the "inhale" cycle the machine blows a certain pressure into my mouth to assist with my inhaling. On occasion, while I am inhaling, the machine will simply stop blowing air in the middle of an inhalation. It's as if someone put their hand over my mouth while I was breathing in. As soon as I breath out, it then works fine for awhile. While not too frequent, it does happen at least two or three times a night. It does get my attention. I did not know whether the DreamStation was supposed to do that? 
My second question: About two weeks ago I received a call from a nice lady from the Sleep Center who had pulled the information my machine had transmitted and she told me that she was concerned that it was not showing any improvement in the amount of incidents that were occuring during the night for me and she told me she was going to call me last week and follow up. I have not received a call as of this date. I was curious to find out if there are problems with my treatment that needed to be addressed. I don't want to keep using the machine if it is not able to improve my issues. I also left a message with the clinic yesterday."

Here was their response today,  

"Hi, 
It was me who spoke to you a couple weeks ago. Download of your data shows that you are still running a little elevated concerning your AHI (how many times you are stopping breathing). 
Your statement about feeling like the machine is not giving you air, can happen on any PAP device. The amount of times that this might be happening according to the data is with in normal ranges. 
With that being said, it might be a matter of us needing to tweak your pressures to help with all the above. 
I am going to reach out to your sleep provider, Adam Winters to see if he has any suggestions and get back to you."

So I politely tried to open the door with this response to them.

 "Thanks Barb, 

I've been monitoring my Dreammapper Philips app and it doesn't seem like I'm making much progress. My AHI's still seem to be elevated and I'm not noticing much difference in energy or feeling rested. There have been a couple of occasions that I've had to stop using the machine because of a stuffed up nose or a cough that I'm sure you can probably see. 



Can you ask Adam if maybe an ASV machine might work better? 


One other question. In the myhealthvet information for me it says my titiration diagnosis is Obstructive but doesn't mention CSA. I thought I was told I had a combination?"

We'll see what happens next. Thanks for the advice.

BTW,  My normal VA physician moved away so I'm in limbo with regards to a regular doctor to ask for an updated prescriptions.   

[Sleeprider]

I hope your question opens the door to some better options. Can you take a look at your settings and tell me every setting currently in use? You will need to access the clinical menu. You can do this by holding down the ramp button and control knob at the same time. We need the mode, and all therapy settings. The length of time that you have for inspiration is controlled by the Ti setting. Increasing that time allows more time for inspiration. Normally that should be 1.8 to 2.0, but can be set longer depending on your needs or preferences. The default setting is only 1.0 seconds and this is likely why you feel cutoff. You can record the existing setting and experiment with some alternative times to find what works best for you.

Another setting is the BPM (breaths per minute). This controls the timing for backup breaths. Your last chart is reporting this incorrectly, and for me to estimate your actual respiration rate, I would need to see a zoomed view of your flow rate. I would suggest about 2-minute segment around 1:20 AM which has relatively few backup breaths indicated. If you can zoom into the flow rate and post that, we can fgure it out.

[SHatfield]

    I hope your question opens the door to some better options.  Can you take a look at your settings and tell me every setting currently in use?  You will need to access the clinical menu. You can do this by holding down the ramp button and control knob at the same time.  We need the mode, and all therapy settings. The length of time that you have for inspiration is controlled by the Ti setting. Increasing that time allows more time for inspiration. Normally that should be 1.8 to 2.0, but can be set longer depending on your needs or preferences. The default setting is only 1.0 seconds and this is likely why you feel cutoff.  You can record the existing setting and experiment with some alternative times to find what works best for you.

Another setting is the BPM (breaths per minute). This controls the timing for backup breaths. Your last chart is reporting this incorrectly, and for me to estimate your actual respiration rate, I would need to see a zoomed view of your flow rate. I would suggest about 2-minute segment around 1:20 AM which has relatively few backup breaths indicated. If you can zoom into the flow rate and post that, we can fgure it out.