Because So Many Have Asked Me To

-SWS wrote:If anybody has a copy of the Trilogy provider's manual, I'll be more than happy to carefully look at all the settings. That might turn out to be a very fruitful discussion in this thread.

I think I found the quick start manual, but unfortunately, at

http://global.respironics.com/manualsan ... ture.asp#T

it says

Trilogy100
(Call Customer Service to order manual, PN 1054141)

Madalot wrote:I just went back and looked over the report from my download a couple weeks. Remember, this darned report is 43 pages long!

I found the summary for leaks. It gives the maximum, minimum and average for leaks, but it provides it for a week at a time (this report does NOT list a day at time in the summary).

I'm looking at the last week of the report:

Maximum Leak: 156.9
Minimum Leak: 35.1
Average: 39.57

So, what you've said about a possible large leak messing things up -- seems like that might be applicable here.

I'm just wondering though -- I know that sometimes when I move/turn over at night, I can hear a HUGE leak, but I immediately fix by adjusting the mask (I do this a lot during the night). Would the ventilator pick that up, thus showing a HUGE leak, even though it wasn't very long? Because my averages are pretty much in the 30's no matter what the maximum got to.

Interesting.

Many people do NOT realize that large spikes are hidden in the "average numbers" reported. Which is why a graph is the preferred method.

I cut my baby teeth on FP 431 - It took me a whole year of messing around before I realized that my pressure was chasing the leaks and the higher the pressure went the more leaks I had.

1 Year. Most of that time was because I had NO DATA - Only a Plus machine and Apria.

While I found the FP 431 to be a very comfortable mask - many people posting here had problems with leaks just like I did.

Switching from 431 to the 432 - Many of the RT's do NOT realize that you will need the next size larger when going to the 432 because the foam filler takes up some space inside this mask. Example - I took a Large 431 but needed an XL 432. Yes, removing the foam may give one some needed space IF the mask is sized wrong.

At a CPAP pressure of 17cm I learned that it was almost impossible to seal the FP 431. One thing I did which helped immensely was to take one finger and press (just lightly) on the elbow (swivel) where the hose connects to the mask. That is the point (under the elbow) where I tied a knee-high nylon around my head to keep the mask from moving away from my face.

NO additional pressure forcing the mask in on my face. Just something to keep the mask from moving out and away from my face when the pressure ramped UP.

I also felt the headgear that came with my 431 stretched more and more even before I woke up - because when I woke up it fit differently. So I change it with the UMFF mask headgear but any Resmed headgear would probably be an improvement.

Worth noting - the 431/2 has a chin cup. When donning this mask the chin should be place into the chin cup first then the mask gently brought up to the face while pulling the headgear up and over the head. I know - I know. But it is the best fit.

I should also note here something I didn't know right off. The 431 comes with 3 different sizes - S, M, & L. This makes it easy to get the right fit. The size is noted on the bottom of the chin cup. The 432 ONLY comes with one size.

I finally got on track to feeling better when I got the software to go with my Respironics Auto and then switched to nasal pillows - the Aeiomed Headrest.

It was a rough ride - just ask my DME

Here's some information on the Trilogy100: http://trilogy100.respironics.com/clinical/default.aspx. I'm not sure that any of the information there is advanced enough to assist in this discussion, but there is a link to the "Quick Start Guide" PDF on the right side of that page.

akcpapguy wrote:Yes the Trilogy does have PC-AVAPS mode, and YES some of the secondary settings will change if you change the mode.

Nevermind already lambasted in PM's for making recommendations so I will just leave you with the facts of the device.

Thanks for the information on changing settings! I had a feeling that I'd better write everything down BEFORE making changes.

As far as the last statement -- you need to do/not do whatever you are more comfortable with. I will respect whatever decision you make.

I think I've made it clear (or I hope I have) that I don't have any problem with someone making suggestions or recommendations for changes in my settings or treatment. While I acknowledge I got very upset recently, it wasn't because people were making suggestions or recommendations. It was the "you need to do this" and "you need to do that" and "you MUST..." and the occasional ridicule over my answers -- that's what upset me.

I am the first to admit that my settings aren't optimum -- there's most likely room for improvement. But I need to decide for myself, based on ALL the information available to me, which suggestions and recommendations I want to pursue. I am the only one that's actually living with this and no matter how hard I try, I just cannot explain every facet of this stupid disease on a message board. And if I make up my mind that I don't want to take suggestions or recommendations, all I ask is that my decision be respected.

But I respect whatever people may decide as far as how much they wish to help.

Editted to Add: And just so everyone knows, I've already made up my mind that any input that crosses this boundary will simply be ignored or dealt with via PM. I came back to the forum, a tad bruised but a whole lot wiser, and made this decision before I started this thread.

So, there's no need for anyone to worry too much. But I appreciate it just the same.

GumbyCT wrote:

Madalot wrote:I just went back and looked over the report from my download a couple weeks. Remember, this darned report is 43 pages long!

I found the summary for leaks. It gives the maximum, minimum and average for leaks, but it provides it for a week at a time (this report does NOT list a day at time in the summary).

I'm looking at the last week of the report:

Maximum Leak: 156.9
Minimum Leak: 35.1
Average: 39.57

So, what you've said about a possible large leak messing things up -- seems like that might be applicable here.

I'm just wondering though -- I know that sometimes when I move/turn over at night, I can hear a HUGE leak, but I immediately fix by adjusting the mask (I do this a lot during the night). Would the ventilator pick that up, thus showing a HUGE leak, even though it wasn't very long? Because my averages are pretty much in the 30's no matter what the maximum got to.

Interesting.

Many people do NOT realize that large spikes are hidden in the "average numbers" reported. Which is why a graph is the preferred method.

I cut my baby teeth on FP 431 - It took me a whole year of messing around before I realized that my pressure was chasing the leaks and the higher the pressure went the more leaks I had.

1 Year. Most of that time was because I had NO DATA - Only a Plus machine and Apria.

While I found the FP 431 to be a very comfortable mask - many people posting here had problems with leaks just like I did.

Switching from 431 to the 432 - Many of the RT's do NOT realize that you will need the next size larger when going to the 432 because the foam filler takes up some space inside this mask. Example - I took a Large 431 but needed an XL 432. Yes, removing the foam may give one some needed space IF the mask is sized wrong.

At a CPAP pressure of 17cm I learned that it was almost impossible to seal the FP 431. One thing I did which helped immensely was to take one finger and press (just lightly) on the elbow (swivel) where the hose connects to the mask. That is the point (under the elbow) where I tied a knee-high nylon around my head to keep the mask from moving away from my face.

NO additional pressure forcing the mask in on my face. Just something to keep the mask from moving out and away from my face when the pressure ramped UP.

I also felt the headgear that came with my 431 stretched more and more even before I woke up - because when I woke up it fit differently. So I change it with the UMFF mask headgear but any Resmed headgear would probably be an improvement.

Worth noting - the 431/2 has a chin cup. When donning this mask the chin should be place into the chin cup first then the mask gently brought up to the face while pulling the headgear up and over the head. I know - I know. But it is the best fit.

I should also note here something I didn't know right off. The 431 comes with 3 different sizes - S, M, & L. This makes it easy to get the right fit. The size is noted on the bottom of the chin cup. The 432 ONLY comes with one size.

I finally got on track to feeling better when I got the software to go with my Respironics Auto and then switched to nasal pillows - the Aeiomed Headrest.

It was a rough ride - just ask my DME

Thanks for sharing your experience with the 431. In this particular situation, my DME was pretty good because she gave me all 3 inserts for the mask so I could switch them out and keep working on it until I was happy.

And I had already researched and found that you needed to go UP a size if getting the 432, which I did. I was using the large insert on the 431 and ordered the XL on the 432.

I may go ahead and switch masks tonight to my new Respironics and see if that's any better. The leak rate may very well be paramount in this situation.

Thanks again!

Kiralynx wrote:

-SWS wrote:If anybody has a copy of the Trilogy provider's manual, I'll be more than happy to carefully look at all the settings. That might turn out to be a very fruitful discussion in this thread.

I think I found the quick start manual, but unfortunately, at

http://global.respironics.com/manualsan ... ture.asp#T

it says

Trilogy100
(Call Customer Service to order manual, PN 1054141)

I HAVE the manual, but it's pretty big and I don't have time to scan the whole thing in.

Sorry Madalot, I didn't mean to imply that it was you who sent me the pm's (however I can see where one might think I was trying to imply that if they followed the other thread). It was a couple of other individuals whe sent me the pm's, for the sake of attempting to keep drama out of this thread I modified my post.

akcpapguy wrote:Sorry Madalot, I didn't mean to imply that it was you who sent me the pm's (however I can see where one might think I was trying to imply that if they followed the other thread). It was a couple of other individuals whe sent me the pm's, for the sake of attempting to keep drama out of this thread I modified my post.

No worries akcpapguy -- I understood what you meant. And for what it's worth, I'm sorry that people have PM'd you over this, although I DO appreciate their concern for my welfare.

No matter what happens, I promise I will do my utmost to keep the drama out of my threads as well. And as I said -- to that end I have a "plan" for handling (or not handling as the case may be) any post that crosses the boundaries I have set out.

I hope that by following my plan, everybody can participate (or not) to their comfort level and we can all stay calm and happy.

Mad, I'm wondering if your DME has any other connections to a really good RT for you? That would make life so much easier for you if you had a go-to person who really understood your situation on a daily basis(and who acted professionally with no drama). I had to put in a complaint about the first VN who came to do wound care(long story) and we now have a wonderful nurse, but in the course of weekend rotations along came the first nurse who knew of my unhappiness with her, but she was pleasant, asked me for my input, did her job properly, and did not make me feel uncomfortable at all. In this business medical personnel need a thick skin.

DoriC wrote:Mad, I'm wondering if your DME has any other connections to a really good RT for you? That would make life so much easier for you if you had a go-to person who really understood your situation on a daily basis(and who acted professionally with no drama). I had to put in a complaint about the first VN who came to do wound care(long story) and we now have a wonderful nurse, but in the course of weekend rotations along came the first nurse who knew of my unhappiness with her, but she was pleasant, asked me for my input, did her job properly, and did not make me feel uncomfortable at all. In this business medical personnel need a thick skin.

It's definitely something to consider. The way things are, right now, is that I have voiced my concerns with the owner. He has told me that what I have experienced is NOT acceptable. He's asked me to try to continue to work with her, while he works ON her from his end. But he pretty much said that she would either do her job, and do it properly and professionally, or he would get someone else in that would.

Now, when I spoke to him last, I expressed to him that there are still problems. And I told him flat out that while I like him and respect him and appreciate what he's trying to do, it may come down to my having to leave because I simply cannot continue trying to work with her. So the way I see it, one of three things is going to happen:

1) She's finally going to GET IT and start doing her job properly and professionally (I don't hold a lot of hope for this outcome though, but miracles do happen).

2) She'll get replaced with a better RT.

3) I'll give up and move on to a different DME.

If #3 is what ends up happening, because I have tried so hard to work with them, the owner has promised me a professional handling of a transition to a new DME if it comes to it.

akcpapguy wrote:Yes the Trilogy does have PC-AVAPS mode, and YES some of the secondary settings will change if you change the mode.

What secondary settings might change?

Banned

Madalot wrote:I HAVE the manual, but it's pretty big and I don't have time to scan the whole thing in.

Oh, absolutely! I'm doing WAY better than I was 18 months ago, and I wouldn't have the energy to scan a whole blasted manual!

I was just annoyed because I was lucky enough to find the manuals for MY machine on that site, and I was hoping the ones for yours might be there, too, and save a great deal of time and effort on someone's part!

Kiralynx wrote:

Madalot wrote:I HAVE the manual, but it's pretty big and I don't have time to scan the whole thing in.

Oh, absolutely! I'm doing WAY better than I was 18 months ago, and I wouldn't have the energy to scan a whole blasted manual!

I was just annoyed because I was lucky enough to find the manuals for MY machine on that site, and I was hoping the ones for yours might be there, too, and save a great deal of time and effort on someone's part!

Thanks for looking for me! Very kind of you to try.

Unfortunately, there is a pretty big difference between a cpap/bipap and a ventilator. Doctors and DMEs are even more "concerned" about patients adjusting the settings. I was actually very surprised when my DME not only gave me the manual, but left the menu so that I CAN make adjustments.

The owner of my DME said I was one of the few patients he would trust to make changes to the vent. And I have to credit this site for that -- it's because of the knowledge I've been able to gain that he feels I know enough to make some changes on my own without needing the RT to come out (although she's still supposed to come here rather than tell me over the phone).

-SWS wrote:I don't think it's a foregone conclusion just yet that PC mode is what Madalot needs to rush into...

Rather, I think the idea is to first see what might not be optimal about her S/T settings---or even if highly-common leaks are the culprit for premature IPAP/EPAP cycling.

Madalot,

What are your thoughts?
Which way do you think you want to go?
or leave well enough alone for the time being with you medical team?

Your call.

Banned

Banned wrote:

-SWS wrote:I don't think it's a foregone conclusion just yet that PC mode is what Madalot needs to rush into...

Rather, I think the idea is to first see what might not be optimal about her S/T settings---or even if highly-common leaks are the culprit for premature IPAP/EPAP cycling.

Madalot,

What are your thoughts?
Which way do you think you want to go?
or leave well enough alone for the time being with you medical team?

Your call.

Banned

Thanks for asking.

If you all want to bounce ideas around, fine by me. You never know what you all will turn up that might be instrumental in getting the settings more optimum.

I am still waiting to hear from my doctor (again) to see what her thoughts are about my overnight from last week. And any changes, at least for now, need to be approved by my RT or doctor. But anything you all come up with could very easily be tried if/when I get to the point that I start messing with the settings myself.

I also wanted to add the I think one of the things my medical team is beginning to realize is that my breathing issues, just like my muscle weakness in my arms and legs, is extremely variable from day to day. Because of that, any settings on the machine may work better from one day to the next. And because of that -- no setting is going to be 100% for me all the time.