Issues with Respironics Trilogy/Specialists

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Matt00926
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Issues with Respironics Trilogy/Specialists

Post by Matt00926 » Tue Aug 11, 2015 9:18 pm

First off, I have updated equipment (I don't see the option listed in the drop-down menu): Using the Respironics Trilogy 100 in AVAPS-AE mode with the F&P Simplus medium-sized full-face mask.

I have seen my sleep doctor a few times but he has openly told me that he is not that familiar with the Trilogy machine (I think most of his patients are being treated for OSA/Sleep Apnea). I suffer from hypoventilation and respiratory insufficiency due to a restrictive thoracic condition.

With the Trilogy came a new DME/respiratory therapist. The RT came to my home to set up the Trilogy and told me he was changing the settings to "what he think would make me comfortable." The RT also manages 85 other people using the Trilogy machine so I'd like to think he knows what he is doing.

While I want to be comfortable, I also want to be adequately treated. The RT set the IPAP at max 16, min pressure support 6 and max 12, EPAP max 5, min 4. I do need a high pressure support to give me o2 and blow of co2. On regular Bi-PAP i was using 19/4 pressures so a PS of 15. The RT also set the target tidal volume to 425 which I never even get close to.

The Trilogy is constantly revving up and basically making me hyperventilate with quick breaths to try and reach the impossible Vt. I've done the calculations myself using predictive body weight and at 8ml/kg my target Vt should be 345ml. I have congenital idiopathic kyphoscoliosis and am only a grand 4'9" tall!

I changed the settings to IPAP max of 20, pressure support max of 16 and min of 6, and kept the EPAP max and min the same. I also changed the target tidal volume to 345ml. The machine no longer goes crazy trying to achieve the impossible.

I recognize that I am not a RT and have no medical background in pulmonology or sleep medicine. From what I have read from clinical guides and general research, too high of a target tidal volume can actually cause lung damage through hyperinflation.

How do I challenge or bring this "technical" information up to the RT when he comes to follow up with me next week? I have to say my confidence is not high.
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palerider
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Re: Issues with Respironics Trilogy/Specialists

Post by palerider » Tue Aug 11, 2015 9:23 pm

Matt00926 wrote:First off, I have updated equipment (I don't see the option listed in the drop-down menu): Using the Respironics Trilogy 100 in AVAPS-AE mode with the F&P Simplus medium-sized full-face mask..
put it in your signature line, instead of listing the wrong equipment.... to avoid future confusion.

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JDS74
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Re: Issues with Respironics Trilogy/Specialists

Post by JDS74 » Wed Aug 12, 2015 5:21 am

Do you have or can get a copy of the scrip prescribing the Trilogy? That would be a starting point.

If the doctor is not providing a proper scrip with the settings to guide the RT because of unfamiliarity with the equipment, perhaps you should be discussing with him a consult with another pulmonary doctor who deals with your special condition and who has experience with the Trilogy to get a better handle on the settings.

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Madalot
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Re: Issues with Respironics Trilogy/Specialists

Post by Madalot » Wed Aug 12, 2015 5:54 am

JDS74 wrote:Do you have or can get a copy of the scrip prescribing the Trilogy? That would be a starting point.

If the doctor is not providing a proper scrip with the settings to guide the RT because of unfamiliarity with the equipment, perhaps you should be discussing with him a consult with another pulmonary doctor who deals with your special condition and who has experience with the Trilogy to get a better handle on the settings.
This will be hard to come by. It's hard enough to find doctors really familiar with cpap/bipap machines, but finding one that understands the Trilogy will not be easy. My experience has been that the RT's work with the doctor to come up with the settings. And if the RT isn't overly familiar with the Trilogy -- oy.

To the OP -- did the RT give you access to the clinical menu to make the changes? You said you changed the settings yourself so I was wondering how you got access to the menu to do it. If the RT gave you access, I wouldn't be overly concerned about telling him you changed the settings.

I'm also curious how you know you weren't reaching the original Tidal Volume of 425. Do you have the software to monitor the Trilogy?

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Matt00926
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Re: Issues with Respironics Trilogy/Specialists

Post by Matt00926 » Wed Aug 12, 2015 7:15 am

Madalot wrote:
JDS74 wrote:Do you have or can get a copy of the scrip prescribing the Trilogy? That would be a starting point.

If the doctor is not providing a proper scrip with the settings to guide the RT because of unfamiliarity with the equipment, perhaps you should be discussing with him a consult with another pulmonary doctor who deals with your special condition and who has experience with the Trilogy to get a better handle on the settings.
This will be hard to come by. It's hard enough to find doctors really familiar with cpap/bipap machines, but finding one that understands the Trilogy will not be easy. My experience has been that the RT's work with the doctor to come up with the settings. And if the RT isn't overly familiar with the Trilogy -- oy.

To the OP -- did the RT give you access to the clinical menu to make the changes? You said you changed the settings yourself so I was wondering how you got access to the menu to do it. If the RT gave you access, I wouldn't be overly concerned about telling him you changed the settings.

I'm also curious how you know you weren't reaching the original Tidal Volume of 425. Do you have the software to monitor the Trilogy?
The RT showed me how to access the clinical menu but said it's probably best not to make changes. With the Trilogy 100 that I have, there is a "full display/menu" view whereby you can see tidal volume, minute volume, respiratory rate, etc. I can watch the tidal volume as I lay there and even for extended periods of time it hardly reaches the target volume. Plus, if I enable the "low tidal volume" alarm it will go off within 15 minutes. I can only reach the target volume when sitting up. Chest wall restrictions are a riot!

I am thinking the problem with the machine "revving" up and forcing me to breathe faster and quicker is the AE mode instead of plain AVAPS. I am going to try just plain AVAPS mode this evening. Last night I didn't sleep more than 2 hours, I felt like crying in frustration. My respiration rate on this machine is higher than my old Bi-PAP where I was using it in plain pressure support "BiPAP S" mode. I also feel like the breaths I take are faster.

Upon further reflection, even in AVAPS-AE mode I could simply set the max and min EPAP to the same value. That way, I still get AVAPS and the back up rate that corresponds with my spontaneous breaths. I've done 2 sleep studies and I've never had any obstructive apneas.
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Re: Issues with Respironics Trilogy/Specialists

Post by JDS74 » Wed Aug 12, 2015 7:55 am

Are there any major medical centers near you like Cleveland Clinic in Ohio, Mayo Clinic in Rochester, MN, Johns Hopkins in Baltimore, etc.?

Perhaps a referral to one of them will get you into the loop with doctors familiar with the Trilogy and help get things squared away.

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Matt00926
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Re: Issues with Respironics Trilogy/Specialists

Post by Matt00926 » Wed Aug 12, 2015 8:02 am

JDS74 wrote:Are there any major medical centers near you like Cleveland Clinic in Ohio, Mayo Clinic in Rochester, MN, Johns Hopkins in Baltimore, etc.?

Perhaps a referral to one of them will get you into the loop with doctors familiar with the Trilogy and help get things squared away.
I live in NYC so there are several major hospitals here. It's funny, the sleep center where my main physician practices does not take my insurance for God knows what reason.

I am supposed to see my RT on Thursday. If I don't feel confident after that, I am going to try a Dr. that was recommended to me, I will do an initial consult and just explain that I don't feel my current doctor/rt are able to cater to my specific needs.
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Madalot
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Re: Issues with Respironics Trilogy/Specialists

Post by Madalot » Wed Aug 12, 2015 8:15 am

I hope you can find a doctor familiar with the Trilogy, but don't be disappointed if you don't. As I said, my experience has been that it's the RT's that handle that area of it. My current Pulmonologist (who I have to see to keep using the Trilogy) has never seen one before and as long as my reports look good, I pretty much take care of how it's set.

That being said, however, it took a long time to get to this point, learning from people here.

I used AVAPS-AE for a while, but gave up because the pulses (FOT's) were too disruptive to my sleep.

If you watch the display and your Vte never gets to your target, you need someone a lot smarter than me to help you. But you have to understand that even though my current target is 400, my original RT (idiot) set me at 600 with the Trilogy open and that thing was blasting me as high as it could go trying to get me to 600.

But even now, I frequently see numbers in the very high thousands at times. So if you're never seeing it high, you definitely need someone smarter than me.

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Matt00926
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Re: Issues with Respironics Trilogy/Specialists

Post by Matt00926 » Wed Aug 12, 2015 8:32 am

Madalot wrote:I hope you can find a doctor familiar with the Trilogy, but don't be disappointed if you don't. As I said, my experience has been that it's the RT's that handle that area of it. My current Pulmonologist (who I have to see to keep using the Trilogy) has never seen one before and as long as my reports look good, I pretty much take care of how it's set.

That being said, however, it took a long time to get to this point, learning from people here.

I used AVAPS-AE for a while, but gave up because the pulses (FOT's) were too disruptive to my sleep.

If you watch the display and your Vte never gets to your target, you need someone a lot smarter than me to help you. But you have to understand that even though my current target is 400, my original RT (idiot) set me at 600 with the Trilogy open and that thing was blasting me as high as it could go trying to get me to 600.

But even now, I frequently see numbers in the very high thousands at times. So if you're never seeing it high, you definitely need someone smarter than me.
Vt in the thousands? Wow. I am going to try regular AVAPS without the -AE applied this evening. The pulses are very disruptive to me as well, last night I was in bed awake pretty much all night. Last night I did change the IPAP max to higher than 16, creating a higher pressure support, and I was able to meet my target Vt of 345ml for the most part.

I really need to work on sleeping, I have been getting up feeling miserable with very little sleep and it's effecting my health and ability to work/do things. Seems I just lay there trying to fall asleep. Without the machine/mask I can fall asleep pretty fast but I wake up feeling awful.
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Re: Issues with Respironics Trilogy/Specialists

Post by Madalot » Wed Aug 12, 2015 8:58 am

Matt00926 wrote:Vt in the thousands? Wow. I am going to try regular AVAPS without the -AE applied this evening. The pulses are very disruptive to me as well, last night I was in bed awake pretty much all night. Last night I did change the IPAP max to higher than 16, creating a higher pressure support, and I was able to meet my target Vt of 345ml for the most part.

I really need to work on sleeping, I have been getting up feeling miserable with very little sleep and it's effecting my health and ability to work/do things. Seems I just lay there trying to fall asleep. Without the machine/mask I can fall asleep pretty fast but I wake up feeling awful.
My AVERAGE Vte is around 450, even with the target being 400.

I am NOT a doctor so I strongly suggest you run this past your doctor and RT - it is my opinion that your Max IPAP is too low. There may be a reason they are keeping it low with your medical condition, but it seems to me that it's limiting the Trilogy's ability to raise the pressure sufficiently to meet the target volume.

My Max IPAP is 23. Data indicates I average around 19 or so (IPAP Min is 18) and occasionally get close to 21. But the machine has room to go up if I need it.

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Matt00926
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Re: Issues with Respironics Trilogy/Specialists

Post by Matt00926 » Wed Aug 12, 2015 9:08 am

Madalot wrote:
Matt00926 wrote:Vt in the thousands? Wow. I am going to try regular AVAPS without the -AE applied this evening. The pulses are very disruptive to me as well, last night I was in bed awake pretty much all night. Last night I did change the IPAP max to higher than 16, creating a higher pressure support, and I was able to meet my target Vt of 345ml for the most part.

I really need to work on sleeping, I have been getting up feeling miserable with very little sleep and it's effecting my health and ability to work/do things. Seems I just lay there trying to fall asleep. Without the machine/mask I can fall asleep pretty fast but I wake up feeling awful.
My AVERAGE Vte is around 450, even with the target being 400.

I am NOT a doctor so I strongly suggest you run this past your doctor and RT - it is my opinion that your Max IPAP is too low. There may be a reason they are keeping it low with your medical condition, but it seems to me that it's limiting the Trilogy's ability to raise the pressure sufficiently to meet the target volume.

My Max IPAP is 23. Data indicates I average around 19 or so (IPAP Min is 18) and occasionally get close to 21. But the machine has room to go up if I need it.
I agree with the Max IPAP being too low, as before I was using 19/4 in pressure support/fixed mode with the regular BiPAP. That was what the sleep study recommended. I then did a follow up AVAPS titration but at another sleep lab (a different State). They recommended a max IPAP of 30 and a max EPAP of 14, giving a PS of 16 theoretically, but I'll be darned if I would let the IPAP go much above 20 because that is very uncomfortable. I think I will set the IPAP max at 20 and check the average Vt when I wake up (along with all the other numbers).

I know they purposely keep my EPAP low at 4-5 because I need a large PS, I also don't really suffer from obstructive apneas so the EPAP doesn't need to be very high. The higher PS provides oxygenation and helps blow off CO2.
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Re: Issues with Respironics Trilogy/Specialists

Post by Matt00926 » Wed Aug 12, 2015 9:11 am

I made an appointment with a new sleep doctor that came highly recommended from my main doctor, so I will do a consultation with them soon and bring them my sleep studies. The Dr. also got his MD from the same school so communication through different hospitals should be easier.
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Re: Issues with Respironics Trilogy/Specialists

Post by Madalot » Wed Aug 12, 2015 9:27 am

Matt00926 wrote:I made an appointment with a new sleep doctor that came highly recommended from my main doctor, so I will do a consultation with them soon and bring them my sleep studies. The Dr. also got his MD from the same school so communication through different hospitals should be easier.
Sounds good. I'll be watching for updates.

Do you have software to monitor your therapy? You said you can see the average numbers. Is that how you're doing it?

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Re: Issues with Respironics Trilogy/Specialists

Post by Matt00926 » Wed Aug 12, 2015 9:45 am

Madalot wrote:
Matt00926 wrote:I made an appointment with a new sleep doctor that came highly recommended from my main doctor, so I will do a consultation with them soon and bring them my sleep studies. The Dr. also got his MD from the same school so communication through different hospitals should be easier.
Sounds good. I'll be watching for updates.

Do you have software to monitor your therapy? You said you can see the average numbers. Is that how you're doing it?
Thanks! I am happy to find a fellow Trilogy user on these boards (although, of course, no one WANTS to need to use such an advanced device!).

I have only been monitoring the numbers "live" while awake. The Trilogy does have an SD Card. I assume it's compatible with SleepyHead? I honestly haven't tried yet. Do you analyze your data?
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Re: Issues with Respironics Trilogy/Specialists

Post by Pugsy » Wed Aug 12, 2015 10:26 am

I believe you are going to need a very special software program from Respironics called Direct View to see any data on that SD card.
SleepyHead and/or Encore aren't compatible with the Trilogy machines.

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