Trilogy AVAPS-AE-Ongoing

[JDS74]

After my fall in June, his main focus is figuring out how to remodel our bathroom (we're working on getting the money right now) so that I can sit in the shower and be able to get in/out of our bathroom easier.

Because of shoulder issues, my wife cannot get in and out of the bathtub by herself. She hates the shower. We solved the problem by getting a bathtub lift that sits in the bathtub. It is hugely cheaper than any of the remodel ideas that we looked at. Could this work for you?

[Madalot]

After my fall in June, his main focus is figuring out how to remodel our bathroom (we're working on getting the money right now) so that I can sit in the shower and be able to get in/out of our bathroom easier.

Because of shoulder issues, my wife cannot get in and out of the bathtub by herself. She hates the shower. We solved the problem by getting a bathtub lift that sits in the bathtub. It is hugely cheaper than any of the remodel ideas that we looked at. Could this work for you?

Unfortunately, no. We have a walk-in shower stall (short step in). We've tried every shower chair out there and NONE of them will work because our shower isn't wide enough. Even if we turn it sideways, I don't have enough room to sit down, then get up. Our only option is remodeling and putting in a 100% handicap shower stall with a built in seat (not that stupid seats that are so low in typical showers) with grab bars & hand-held sprayer.

We're working on a home refinance right now (and naturally, there are glitches) and we're trying to get enough money out to pay for this remodel.

[JDS74]

Sounds like a 32 inch square shower stall. They are really tiny.

[Madalot]

Sounds like a 32 inch square shower stall. They are really tiny.

Luckily, it has a grab bar the entire length. As long as I am VERY careful (and adjust the order that I do my stuff) I CAN do it until we make changes. But we're trying to avoid another accident.

[Sir NoddinOff]

I've noticed that in America there is often a stigma attached to couples sleeping in different beds in the same room... even more so with couples sleeping in different rooms. I haven't seen that so much in Europe and in some other parts of the world. I wonder if it harkens back to our Puritan background here in the US?

[Madalot]

I've noticed that in America there is often a stigma attached to couples sleeping in different beds in the same room... even more so with couples sleeping in different rooms. I haven't seen that so much in Europe and in some other parts of the world. I wonder if it harkens back to our Puritan background here in the US?

I don't know anything about that, but if we have to sleep in separate beds, it would have to be in separate rooms. My snoring (on my back only) is what's bothering him and if he's in the same room, separate beds won't solve the problem.

[Hawthorne]

Maybe an intercom (ie - baby monitor) would be useful if you slept in a different bedroom. We have a phone setup with one major phone with an answering machine and 2 handsets that can be in different rooms without a telephone outlet. Only the main unit needs a telephone outlet. Each handset has an intercom button that can be pushed and the other handsets give a ring that is different from an incoming call. My husband gets up an hour earlier than I do in the morning and goes downstairs. We have a 1 story bungalow but the basement is finished and he goes down in the morning to exercise and check his computer. I can push the intercom button on the bedroom handset if I need him and it will ring on the downstairs handset so that he knows I need him. We haven't had to use it very often over the years but it is peace of mind to know we can.

It was not a very expensive telephone system but it sure worth it's weight in gold!

[Madalot]

Maybe an intercom (ie - baby monitor) would be useful if you slept in a different bedroom. We have a phone setup with one major phone with an answering machine and 2 handsets that can be in different rooms without a telephone outlet. Only the main unit needs a telephone outlet. Each handset has an intercom button that can be pushed and the other handsets give a ring that is different from an incoming call. My husband gets up an hour earlier than I do in the morning and goes downstairs. We have a 1 story bungalow but the basement is finished and he goes down in the morning to exercise and check his computer. I can push the intercom button on the bedroom handset if I need him and it will ring on the downstairs handset so that he knows I need him. We haven't had to use it very often over the years but it is peace of mind to know we can.

It was not a very expensive telephone system but it sure worth it's weight in gold!

I hadn't thought about something like that. If we end up doing to separate bedrooms, that would be a great option. But truthfully, my husband, right now, would rather have his sleep interrupted than sleep in separate bedrooms. I'm not sure if/when he'll ever agree that it might have to be that way for him to get good rest. I'm going to keep waking up no matter what, but if I'm NOT snoring, he doesn't get disturbed.

Last night went reasonably well and once I look at the data and am sure I am not compromising my therapy, we can go this way for a while if need be.

[aytikvjo]

The FOTs appeared on schedule but since this is very important, I tried to ignore them. And I fell asleep. I flipped on my back as usual, but my husband did NOT bug me. I slept reasonably well and turned to my side again in early morning. I asked him if I snored and/or bothered him during the night and he said "Not too bad."

It's good to hear you were able to fall asleep.

Post your original S/T w/ AVAPS settings for me and then post what you are running with now on AVAPS-AE so I can see a side-by-side.

When I first lay down last night, it was obvious I had something messed up because the IPAP was only hitting around 15 or 16 (my minimum is 18). I fiddled with the settings (and I'll be honest it was fiddling, nothing with any degree of certainty about what I was doing) and got it to get the IPAP to 18. Once I got that accomplished, I got comfortable and tried to go to sleep.

I'll wait to see what you have set before making any conclusions, but I know that when I am on my back, the necessary PS to reach a certain tidal volume goes down.

[Madalot]

Post your original S/T w/ AVAPS settings for me and then post what you are running with now on AVAPS-AE so I can see a side-by-side.

AVAPS:
S/T
AVAPS ON (obviously)
AVAPS Rate 3.0
Tidal Volume 400
IPAP Max 23.0
IPAP Min 18.0
Breath Rate 7
Inspiratory Time 1.5
Flow Trigger
Flow Trigger Sensitivity 6.0 l/min
Flow Cycle Sensitivity 25%
Rise Time 4
Ramp OFF
Remaining Options OFF

AVAPS-AE

AVAPS Rate 3.0
Maximum Pressure 23
Pressure Support Max 14.0
Pressure Support Min 9.0
EPAP Max Pressure 14.0
EPAP Min Pressure 9.0
Breath Rate 7
Inspiratory time 1.5
Flow Trigger
FT Sensitivity 6.0 l/m
Flow Cycle Sensitivity 25%
Rise Time 4
Ramp OFF
Remaining Options OFF

[aytikvjo]

Post your original S/T w/ AVAPS settings for me and then post what you are running with now on AVAPS-AE so I can see a side-by-side.

AVAPS:
S/T
AVAPS ON (obviously)
AVAPS Rate 3.0
Tidal Volume 400
IPAP Max 23.0
IPAP Min 18.0
Breath Rate 7
Inspiratory Time 1.5
Flow Trigger
Flow Trigger Sensitivity 6.0 l/min
Flow Cycle Sensitivity 25%
Rise Time 4
Ramp OFF
Remaining Options OFF

AVAPS-AE

AVAPS Rate 3.0
Maximum Pressure 23
Pressure Support Max 14.0
Pressure Support Min 9.0
EPAP Max Pressure 14.0
EPAP Min Pressure 9.0
Breath Rate 7
Inspiratory time 1.5
Flow Trigger
FT Sensitivity 6.0 l/m
Flow Cycle Sensitivity 25%
Rise Time 4
Ramp OFF
Remaining Options OFF

OK checked with the available options on mine:
You're, missing the EPAP setting on S/T AVAPS and tidal volume on AVAPS-AE (though i'm assuming Vte is the same on both modes, need to know the EPAP)

[Madalot]

Post your original S/T w/ AVAPS settings for me and then post what you are running with now on AVAPS-AE so I can see a side-by-side.

AVAPS:
S/T
AVAPS ON (obviously)
AVAPS Rate 3.0
Tidal Volume 400
IPAP Max 23.0
IPAP Min 18.0
Breath Rate 7
Inspiratory Time 1.5
Flow Trigger
Flow Trigger Sensitivity 6.0 l/min
Flow Cycle Sensitivity 25%
Rise Time 4
Ramp OFF
Remaining Options OFF

AVAPS-AE

AVAPS Rate 3.0
Maximum Pressure 23
Pressure Support Max 14.0
Pressure Support Min 9.0
EPAP Max Pressure 14.0
EPAP Min Pressure 9.0
Breath Rate 7
Inspiratory time 1.5
Flow Trigger
FT Sensitivity 6.0 l/m
Flow Cycle Sensitivity 25%
Rise Time 4
Ramp OFF
Remaining Options OFF

OK checked with the available options on mine:
You're, missing the EPAP setting on S/T AVAPS and tidal volume on AVAPS-AE (though i'm assuming Vte is the same on both modes, need to know the EPAP)

Sorry -- as I was getting the info & typing it, my husband came in with a letter from our son, who is in his 2nd week of Basic Training in the Army. We've been waiting to hear from him so I got distracted.

EPAP on Regular AVAPS is 10. Tidal Volume is 400 on both.

[aytikvjo]

Ok. With your posted settings, your Maximum pressure of 23 was limiting the Max EPAP + Max PS. So if you are near the high end of your PS range then EPAP would be forced low to maintain adequate ventilation (maybe too low to stop the obstructives).
With your old settings your pressure support range is 8 to 13 cmH2o.
How high a pressure can you go with that mask before leaks are out of control? Any medical contraindications to raising the max pressure?

So i'd say something like:

Max Pressure: 28
PS Max:14
PS Min:8
EPAP Max:14
EPAP Min:9

Let me know if you think that maximum pressure is too high. 25 or 26 might be better for you.

This falls in line with your previous settings in that you've lowered your EPAP min by 1, for comfort I'm presuming, but given yourself a decently wide range of EPAP for the machine to maintain the airway with. I put your PS Min at 8, like you had it before in S/T, because you don't want to set the minimum too high (you had it at 9) or it will start overshooting the Vte no matter what.

Your PS Min of 8 is pretty high, though It's hard to tell if it's appropriate without data in front of me. What level of Pressure support is typical during your therapy? Do you find that you are overshooting/undershooting your target tidal volume? Or is it spot on +/- 30 most of the time? A PS with a wide range won't really hurt things because it will settle to the right value, but on startup my machine starts with the PS Max/IPAP Max and slowly dials down until it gets the right tidal. This might be uncomfortable for a minute or two just starting out because of the higher pressures. The idea with AVAPS is that it can change the PS as the disease progresses and maintain a tidal volume, so having a higher PS Max is not really a bad thing, and certainly might become necessary later. I would either set it high and not worry about it or monitor your data closely to make sure that you aren't hovering around your PS Max constantly.

If it's not dialing the IPAP up / down fast enough, you can always change your AVAPS rate to 4 (i think 5 is max) and it should go a bit faster.

Your breaths per minute is pretty low at 7 BPM. This gives a minute ventilation of like 2.8 L/min (very low). Typically for mechanical ventilation its set at like 10-12. What is your normal daytime and nightime BPM? I know mine is at like 16-17 typically.

[Madalot]

A lot of information in that post. Let me see if I can answer your questions. But let me reiterate that for some reason, I cannot 100% grasp "Pressure Support" and when I say "grasp" I mean what it is and how to set it. For some reason, my brain is not able to fully comprehend it. Thus why I'm having a lot of trouble with some of this.

I could set my maximum IPAP to 28 I believe. It's been a LONG time since it was that high.

My breath rate at 7 is because any faster, the Trilogy rushed me to inhale and I felt like I was going to hyperventilate.

I need to read and re-read your information as to the settings that pertain to PS. I will try to modify some of those, if possible for tonight.

[Madalot]

I just realized you ask a question that I did not answer. You asked about my typical BPM during the day and at night. My nighttime average at night tends to be around 10-12 (from the Direct View data), but before I go to sleep, anything faster than 7 rushes me.

I do not know about during the day. When resting, I breathe very slowly, probably in the 8-12 range. However, when I'm doing anything physical -- like walking, making the bed, doing dishes, doing laundry, etc., -- I CANNOT breathe and do these activities at the same time. What I mean is I hold my breath until I get a chance (less movement) to take a breath, then I have to hold it again.

It was explained to me because of the muscle weakness and diaphragm weakness, I use muscles normally used for physical activity to help me breathe. When I'm doing something physical, those muscles can't do both. So I move a little, breathe a little, move a little, breathe a little. It makes emptying the dishwasher, doing laundry, making the bed, etc., extremely difficult tasks for me.

So answering about daytime BPM -- I have no idea!