Question - Don't Know If Anyone Knows

Slinky wrote:I see where the Trilogy requires the Respironics DirectView software. Interesting. An entirely different software than their PAPs.

http://www.healthcare.philips.com/main/ ... efault.wpd

Yep -- and patients can't get it. When this happened last time, I took my card into the DME, told them approximately what time it happened. Unfortunately, the time on the software download did NOT mesh at all with real time of the ventilator, thereby making it impossible to see what was going on with the ventilator at the time I said.

Really irritated me.

I wish I could find a way to get the software and monitor everything myself. I'd be more than happy to do it, but for the fact that even if I could get it, I'm told it's about $400, money I don't have. But it sure would be nice to watch this crap myself and not have to rely on people first believing me, then taking the time to actually look, AND have their computer time set up properly so you could actually match up the time from the vent.

It seems the ventilator is auto-cycling for some reason. The two most common reasons are water in the circuit or a leak. Are you using a humidifier on the vent since I do not see one listed in your profile? If you are, do you get water in the circuit? Even small amounts of water sloshing around can cause this. Another reason could be that the sensitivity on the machine is too sensitive. This is something that could be adjusted easily by your RT or the DME provider. Is it easy for you to initiate a breath or do you find it difficult? This is a function of the sensitivity. If it is super easy for you to initiate a breath, you may be able to have the sensitivity decreased.

When the Trilogy was giving the 30 breaths, did it show patient initiated breaths on the screen or only machine breaths? Was the pt. breath light signaling? If the back up rate is set at 7 breaths per minute then the most the ventilator will give you, dead or alive, is 7 mandatory breaths a minute. If the ventilator doesn't sense a patient initiated breath in a certain period of time, it will then give you a breath. I really think something is fooling the ventilator into thinking you are initiating or "asking" for those breaths. The only way the ventilator could give machine breaths at a rate of 30 would be if there is a malfunction of some sort. You then would need to call the DME and have them check the vent immediately.

Does your circuit use an external exhalation valve, an exhalation port or only the integrated leak holes on the mask? It is important to ensure that the vent is set appropriately for the kind of exhalation system you have. There is a passive setting (for exhalation ports or integrated leak holes) or active (for circuits with an exhalation valve). The occlusion of the exhalation port/holes could have caused the pressure in the system to increase but it would be unusual for it to cause auto-cycling. All ventilators have an emergency pressure relief if the pressure in the circuit gets too high. Since the pressure in the system was still within your set parameters, you were not at the point of having a dangerous amount of pressure in the circuit.

Let me know if this helps lead you to discover what was happening. Good luck. I hope all goes well tonight.

Hello Pekoepup,

What an incredibly helpful and informative post! Thank you so much. I will answer each of your questions to the best of my ability:

Pekoepup wrote:It seems the ventilator is auto-cycling for some reason. The two most common reasons are water in the circuit or a leak. Are you using a humidifier on the vent since I do not see one listed in your profile? If you are, do you get water in the circuit? Even small amounts of water sloshing around can cause this. Another reason could be that the sensitivity on the machine is too sensitive. This is something that could be adjusted easily by your RT or the DME provider. Is it easy for you to initiate a breath or do you find it difficult? This is a function of the sensitivity. If it is super easy for you to initiate a breath, you may be able to have the sensitivity decreased.

I don't have a humidifier as I was told it isn't necessary with this equipment. So, we can rule out water as a problem. Sensitivity is an interesting question. The sensitivity is set fairly high, probably because my shallow breathing could not consistently trip bipap machines, even at their most sensitive settings. Usually, this works great, but I DO find that occasionally, the ventilator senses a breath from me that I didn't know I did!

Pekoepup wrote:When the Trilogy was giving the 30 breaths, did it show patient initiated breaths on the screen or only machine breaths? Was the pt. breath light signaling? If the back up rate is set at 7 breaths per minute then the most the ventilator will give you, dead or alive, is 7 mandatory breaths a minute. If the ventilator doesn't sense a patient initiated breath in a certain period of time, it will then give you a breath. I really think something is fooling the ventilator into thinking you are initiating or "asking" for those breaths. The only way the ventilator could give machine breaths at a rate of 30 would be if there is a malfunction of some sort. You then would need to call the DME and have them check the vent immediately.

When I turned off the screen saver and watched, "most" of the breaths were machine generated, only indicating patient when I got a breath in on my own.

This is NOT the first time this has happened. When this occurred the very first time, I did exactly that and took the ventilator into the DME to be checked. We could not duplicate the problem. This last occurrence was on a different Trilogy as my regular unit is in for annual maintenance.

Let' assume for a minute that there is no machine malfunction (but I am NOT ruling it out). What would the machine do, with these settings (S/T & AVAPS) if I just stopped breathing. WOULD the machine freak out like that and start pushing pressure? That would almost make sense to me for it to behave that way. Or would it just continue giving me the mandatory breaths at my set Breath Rate? But I am really not savvy enough to understand what these machines would do.

Pekoepup wrote:Does your circuit use an external exhalation valve, an exhalation port or only the integrated leak holes on the mask? It is important to ensure that the vent is set appropriately for the kind of exhalation system you have. There is a passive setting (for exhalation ports or integrated leak holes) or active (for circuits with an exhalation valve). The occlusion of the exhalation port/holes could have caused the pressure in the system to increase but it would be unusual for it to cause auto-cycling. All ventilators have an emergency pressure relief if the pressure in the circuit gets too high. Since the pressure in the system was still within your set parameters, you were not at the point of having a dangerous amount of pressure in the circuit.

What I have is a big, round bacterial filter (big white/clear thing) attached to the vent, then the hose attached to that, then my mask (F&P 431). The Circuit Type is set to "Passive." So, this sounds appropriate to me.

I agree that the pressure was within my set limits, but it was VERY uncomfortable and definitely woke me up. If the pressure has just been high and not pulsing, I would have just turned over and gone back to sleep. But with it pulsing in that way (my mask was actually pulsing on my face as well) there was no way for me to go back to sleep and I had no choice but to turn everything off.

Pekoepup wrote:Let me know if this helps lead you to discover what was happening. Good luck. I hope all goes well tonight.

I thank you again for this information. Last night was fine with no problems whatsoever. Aside from my normal awakenings that we're trying to fix, nothing out of the ordinary took place.

You did a great job answering my questions. At this point, we can definitely rule out water in the circuit. The sensitivity setting may be too sensitive for you but I am not sure it would cause the auto-cycling if the machine was only indicating machine breaths. If you told me that all the breaths were patient triggered breaths, then I would be certain that it was auto-cycling from the sensitivity.

There is one more culprit but I need to do a little research on it. Most ventilators have apnea ventilation settings. Most home ventilator settings assume that the patient will be doing some breathing on their own along with the ventilator. For safety reasons, the apnea ventilation will kick in the the machine senses no respiratory efforts from the patient. On some machines, they are set by the clinician but on others, they use a preset logarithm based on the set back-up rate. I need to find out what system the Trilogy is using. Do you have apnea along with the neuromuscular condition? What may have happened it that the machine did not sense a breath for a period of 15-20 seconds (leak in mask, true apnea or very shallow breathing can all cause this) and the machine kicked into apnea ventilation. The apnea rate may be set at the 30 breaths you were experiencing or it may be a default setting. I will find out for sure and I will let you know Wednesday if I can find out sooner.

Pekoepup

While I don't know anything about your ventilator, I do know that the filters that you are using can cause problems for the machines to sense your breathing. As they get clogged up or saturated with water they will increase the flow resistance. I had to quit using mine they would clog up with water vapor or pollen after one or two days and my Auto would go crazy trying to adjust pressure and "cflex" to my breathing . Once I took it out everything was fine, I just have to suffer with my allergies, but I can breathe. So I would recommend trying it without them and see if that helps

Pekoepup wrote:You did a great job answering my questions. At this point, we can definitely rule out water in the circuit. The sensitivity setting may be too sensitive for you but I am not sure it would cause the auto-cycling if the machine was only indicating machine breaths. If you told me that all the breaths were patient triggered breaths, then I would be certain that it was auto-cycling from the sensitivity.

Once I sat up and could really watch what it was doing, I was hard pressed to get any patient-triggered breaths in. A few slipped in there because I was trying to breath myself, but the machine was doing almost all the breathing at that point.

Pekoepup wrote:There is one more culprit but I need to do a little research on it. Most ventilators have apnea ventilation settings. Most home ventilator settings assume that the patient will be doing some breathing on their own along with the ventilator. For safety reasons, the apnea ventilation will kick in the the machine senses no respiratory efforts from the patient. On some machines, they are set by the clinician but on others, they use a preset logarithm based on the set back-up rate. I need to find out what system the Trilogy is using. Do you have apnea along with the neuromuscular condition? What may have happened it that the machine did not sense a breath for a period of 15-20 seconds (leak in mask, true apnea or very shallow breathing can all cause this) and the machine kicked into apnea ventilation. The apnea rate may be set at the 30 breaths you were experiencing or it may be a default setting. I will find out for sure and I will let you know Wednesday if I can find out sooner.

This is a VERY interesting thought. The question about whether or not I have OSA along with a neuromuscular disease has never been fully determined. Initially, they said it was OSA, but changed the official diagnosis to diaphragm muscle weakness after I couldn't consistently trip the bipap machines. If I had to guess (which is what I do an awful lot) I would say I suffer from BOTH problems.

REVISED INFO BELOW RE APNEA BREATH RATE:
The Trilogy has an apnea alarm. When enabled, you have to set an Apnea Breath Rate. The Apnea Rate CANNOT be lower than the Breath Rate (aka Backup Rate) of the machine. It can be higher, but not lower.

Anyway -- we had to turn the Apnea Alarm OFF because it went off all night long, even before I went to sleep. I would be sitting there watching TV and the Apnea Alarm would go off. The only way we could get it so it wouldn't go off almost constantly was to set the Breath Rate & Apnea Breath Rate to 6, which is awfully slow. IF I fell asleep, I could usually get a couple hours in, but it would still go off a lot during the night.

I asked about this and was told that something about the way the Trilogy defines an "apnea" makes it alarm even if you're not having a real apnea. I never did understand this and gave up trying to figure it out.

Thank you for the help on this. Some very interesting thoughts and ideas.

physicsbob wrote:While I don't know anything about your ventilator, I do know that the filters that you are using can cause problems for the machines to sense your breathing. As they get clogged up or saturated with water they will increase the flow resistance. I had to quit using mine they would clog up with water vapor or pollen after one or two days and my Auto would go crazy trying to adjust pressure and "cflex" to my breathing . Once I took it out everything was fine, I just have to suffer with my allergies, but I can breathe. So I would recommend trying it without them and see if that helps

I have no humidifier and therefore no water involved in my machine. I have been told by EVERYONE involved in my care that my filters are extremely important. I clean them thoroughly at least every two weeks and am now trying to do them weekly when I remember. My DME has looked at them and even right before they need cleaning has said they are very clean anyway.

But thank you for the thought!

It dawned on me that I should put some pertinent information in THIS thread about the ventilator --

I had a LONG talk with the Respiratory Supevisor at my new DME yesterday. The Trilogy ventilator is NEW to them and they are learning about it because of me (as an "inherited" patient). But they are doing a good job getting themselves up to speed about it.

The RT Supervisor told me that the my ventilator (currently in for maintenance) and the backup unit I'm using are both ORIGINAL units when Respironics first came out with this product. Both ventilators are TWO upgrades behind (mine is getting that right now).

It is POSSIBLE that some of my issues (like the wackiness the other night) might be resolved once the upgrade is completed.

The RT Supervisor also told me that they've had issues with Respironics products with the alarms, exactly like I describe with the Apnea alarm -- going off for no apparent reason.

Anyway -- he and I both agree that we need to get MY ventilator back as quickly as possible and see if some of the issues resolve with the upgrade.

I will definitely be looking for additional information (if anyone has it) but will also update once I get my vent back and use it for a while.