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Pad A Cheek wrote:I am encouraged along with you on your recent trial Maddy. I noticed that your post was from 10PM. Do you know how unusual it is for you to be up at that time?

I found a while back that the best way for me to deal with the vent, and ASV is so similar, is to wait until I am so sleepy that I am already dozing off. If I lay down and mask up before that, I tend to have so much trouble falling asleep and have more breathing problems. I used to watch TV, but now I use the tablet and read (still not easy, but doable with the Kindle) and play Words with Friends with a family member that stays up half the night. I always quit before he does...

Pad A Cheek wrote:LIFE IS A PROCESSION OF EVENTS, SOME TO BE CHERISHED AND SOME TO BE ENDURED, BUT ALL CONTRIBUTE TO THE FINAL OUTCOME OF WHO WE ARE TO BECOME.
(This is one of my original thoughts)

I like this. I may have to print it and put it on my wall.

Pad A Cheek wrote:I wish you the very best Maddy, please keep us posted. Hugs to you and yours. Tell your daughter that I am so proud that she is caring enough to encourage you to use your therapy.

Thanks. My daughter CAN be so kind and caring (and I always try to keep that in mind) but she's also a teenager that could drive a saint to distraction. But I love her anyway.

I will keep the board posted on this experiment.

I started doing some thinking in the shower and have come to a couple of preliminary conclusions. Here is what I sent to my DME & Doctor about the situation as of now:

Two naps and two nights on the ASV HAS brought me to a couple preliminary thoughts.

The two machines are very similar in the way they work and how I react to them. I think I AM sleeping a bit better and feeling a bit more refreshed on the ASV. There are two main differences that I can think of that makes the ASV a bit better:

1. Pressure Support (variable EPAP). The Trilogy CAN do this in SIMV & PC-SIMV modes, but the "Low Inspiratory Pressure" alarm cannot be disabled and goes off numerous times during the night.


2. Humidification. Was told initially that humidification was not necessary on the Trilogy, but since it's functioning as a high-tech bipap, I don't understand how that can be. The humidification on the ASV is really nice and makes the air easier for me to breathe.

My situation is unusual and careful thought needs to be given before any FINAL decision about which machine is better for me in the long run. Insurance issues are a big one that IF we decide to pursue switching to the ASV -- DME would need to investigate.

IF we decide that the Trilogy is a better/safer solution for my needs, humidification would be greatly appreciated.

Maddie,
That surprises me that you didn't have a humidifier on your Trilogy. If you do end up continuing with that machine, there are several companies that make a stand-alone heated humidifier for cpap use. F&P makes one or used to. I have one I could send you if need be.

And regarding the breathing with the ASV, remember that you're only two days in. It usually takes people longer then that to get things dialed in. I know your experience helps, but I'll bet there are tweaks to be made that would allow the ASV to be even more comfortable.
Keep up the good work...and take care,
Jamis

Thank you, Jamis. Very nice of you to make that offer.

When the RT was here Tuesday, she seemed genuinely surprised that I did not have humidification with the Trilogy. I suspect that the only people that knew were me and the original DME. This is probably a "no brainer" as far as resolving should I stick with the Trilogy.

The ASV isn't bothering me much at the current settings, but I agree with you it's only been a couple days and its possible it could be tweaked even more.

The biggest difference I've noticed is how I feel after my afternoon naps - more rested.

I haven't gotten any response yet from my doctor or DME about my initial thoughts. I'm very interested to see how THEY feel about this.

I think everyone (including people here) believes going on the Trilogy was a major leap beyond what should have been done. Unfortunately, I was too naive and uninformed at the time to put a stop to it and ask about something like an ASV. And my doctor commented that she thought we HAD tried an ASV before going to the Trilogy.

What a journey. Maybe I'll "arrive" someday soon....

It's good to hear that the trial is off to a promising start.

And it's good to hear that finding out that you like the humidifier gives them something to work on if the ultimate decision is to keep you on the Trilogy.

Crossing my fingers and toes that the news continues to be good for you ....

It just struck me that you seem to have to go backward before you can go forward? Hoping you "arrive" very soon!

Another afternoon nap on the ASV -- slept pretty well. I woke up very suddenly about 30 minutes in, but have no idea why. It didn't seem that pressure was extra high or anything -- could have been something in the house (a cat maybe).

I did NOT want to stay up when I woke up 1.5 hours in - REALLY, REALLY, REALLY wanted to go back to sleep, but my daughter was coming home and I had an "issue" with her that needed to be dealt with, so I stayed up.

Again -- I didn't feel like total crap like I frequently do after a nap on the Trilogy.

I'm wonder if the pressure changes are smoother and/or the humidification is what's doing it...

Tonight will be my 3rd night on it.

Maddie,
Are you accessing the full data via Sleepyhead? You could look to see if there's any indication of what might have awakened you. That's something you couldn't do with your Trilogy...I just thought you might want to take a shot at it to see if the data is useful.
J

jamiswolf wrote:Maddie,
Are you accessing the full data via Sleepyhead? You could look to see if there's any indication of what might have awakened you. That's something you couldn't do with your Trilogy...I just thought you might want to take a shot at it to see if the data is useful.
J

Yes, I can access the full data. I'll do it tomorrow. Sleepyhead is showing both the naps and overnights very nicely.

Thanks...

Oh Ugh...

Last night was pretty horrible. I tried to go to sleep BEFORE I was actually falling asleep. That was a mistake as I laid there for over an hour. And I kept waking up, although the environment may have been a factor -- very warm last night - it was 60 degrees when I went to bed. Bizarre for January.

My mask leaked like crazy towards early morning. I don't know if the seal was pulled out or what was going on. And lastly, we forgot to top off my water and my tank was dry - as was my mouth by 5am. Why this would be a problem on the ASV when I don't have a humidifier on the Trilogy -- ???

My overnight pulse ox looked good. Basal 02 96.1 with 1 desat to 92 (I don't consider this a real desaturation but the software does).

I have uploaded my data. I will try to scan/post a report later today -- see what others think of it.

I'm going to try this again. Photobucket and I were having a "disagreement" but I think I have it fixed. Below will be the download from yesterday/last night from Sleepyhead. The shorter session around 1500 hours was my nap yesterday. If the right side is cut off, I am sorry, but nothing I have done has fixed it.

Oh -- my husband found that my insert was slightly out in one spot, thus why I was having such a leaking problem. Hopefully it will be better tonight.

Here is the data from the previous night (Wednesday night) --

In addition to the humidifier, I wonder if the patient triggered breathing might also be better on the ASV than ventilator. Why do I say that? The PR SystemOne ASV is designed to encourage the patient to initiate the breathing as much as possible. A ventilator will tend to INSIST on a certain number of breaths per minute (BPM). This insistence probably comes at the cost of arousals, that is it tend to move you from deeper to lighter sleep. Those arousals due to change from exhalation to inhalation pressure would tend to awaken you just as much as apneas would awaken you. In "Auto" mode (for the BPM setting), the unit is working hard at allowing you to breathe on your own, it won't switch pressure until it is certain you need to breathe.

As I've noted before the PR SystemOne ASV and the predecessor from Respironics tends to have a little more "wiggle room" in the breathing. But I find that typically makes it easier for me to fall asleep with the Respironics version than the Resmed version.

Just another possibility to consider.

Great info, John. Thanks!

I haven't heard from either my doctor or DME yet, but they may want to wait until I've used the ASV the full week before coming to any conclusions or making any recommendations.

I plan to keep using it through Monday night and go from there.

Madalot wrote:Oh Ugh...
Last night was pretty horrible. I tried to go to sleep BEFORE I was actually falling asleep. That was a mistake as I laid there for over an hour. And I kept waking up, although the environment may have been a factor -- very warm last night - it was 60 degrees when I went to bed. Bizarre for January.

I'd say go back to your pattern of waiting until you are feeling like you're falling asleep before going to bed. I know that it's a pain in the butt, but it's better than lying in bed for an hour waiting for the sleep fairy to come.

And I'm like that too. Most nights I wait until I'm yawning pretty uncontrollably to wander up the stairs and put Kaa on and climb into bed. If I try to go to bed before I'm on the edge of falling asleep, I'll either lie there becoming more and more miserable (usually with aerophagia) or I'll wind up getting out of bed anyway.

And for what it's worth, we're having bizzare weather up here too: January has been a very rainy month and we've had many nights where the low was above freeing. Yuck. That's the kind of winter weather I wanted to leave behind me when I moved away from Virginia after college.

My mask leaked like crazy towards early morning. I don't know if the seal was pulled out or what was going on. And lastly, we forgot to top off my water and my tank was dry - as was my mouth by 5am. Why this would be a problem on the ASV when I don't have a humidifier on the Trilogy -- ???

The OSA data looks very good by the way in my opinion. On both nights those high leak periods correspond pretty closely to when the pressure increased quite a bit and it's possible that in part they simply reflect the higher "intentional leak rate" for the mask at those higher pressures.

On Thursday night there's a huge decrease in patient triggered breaths that kicks in around 5:00 and there's a significant increase in pressure at the same time for obvious reasons. The other periods of larger than baseline leaks seem to correspond to times when the machine was increasing pressure in response to vibratory snoring. On Wednesday night, the largest increase in pressure (and the corresponding increase in leaks) is during a period where you were snoring pretty regularly. The patient triggered breaths are much, much better on Wednesday than Thursday.

Any clue as to why the machine had to trigger so many breaths after 5:00AM today?