ASV One Week Trial - Continuing Updates

[Madalot]

My RT is coming this afternoon with the Respironics ASV (System One I believe) for my one-week trial. I have gotten out a brand new mask that she is going to help me fit (the last one I got out I just have not been able to stop the leaks...irritating). I've got a new hose (in case) and also have a few new SD cards in case the machine doesn't have one. Sleephead is up and running on my computer...I am set.

I admit that I still doze off in my recliner without the machine. I know it's bad and I know it's wrong, but I usually don't hook up unless I'm planning a nap.

Last night, I dozed off in my recliner about 6:45 and slept until almost 8. My daughter was afraid to yell at me (I get that because I sometimes get mad about it).

When she went to get her shower, she said something that really "hit" me:

"Mama, can you do me a favor and NOT fall asleep while I'm in the shower? I didn't say anything, but there were a couple times you scared me because I wasn't sure you were breathing. Please don't go to sleep."

I could take the "attitude" that everyone is damned lucky I use the machine as much as I do (every night and during planned naps). When you consider how adamant I was a few years ago that I would NEVER do even a cpap, the fact that I do as much as I do now is amazing.

However, I don't like scaring my kids.

I have got to keep trying until I find something (anything) that helps this daytime/early evening fatigue.

Let's hope the ASV sheds a bit of light on the subject.

[jamiswolf]

Hi Maddie,
Sounds like you have a good support system at home. You might feel bad about worrying your daughter, but she's developing responsibility and other skills that will serve her well in life.

I wanted to wish you luck with the ASV trial. I don't have any technical recommendations. But even if your therapy is close to the same, you'll still be getting way more therapy data from the ASV then with your Trilogy. Fingers crossed for you.
Jamis

[Madalot]

Thanks, Jamis.

In a perfect situation, the ASV would end up being so much better that my doctor orders me switched to it permanently, but that remains to be seen. My hope is that even IF she says I have to stick with the Trilogy, data from ASV gives us some idea of what we could do to tweak the Trilogy to fix some of this. I would be satisfied with that outcome.

I'll keep you all posted on how it goes...

[Madalot]

Bumping this up after taking an 1.5 hour nap on the ASV this afternoon (mainly because my daughter was in the room and I figured it would be wise to mask up) --

The first 2-3 minutes were a little hairy, but I figured the machine was doing it's "thing" trying to figure out what I needed. Next thing I knew, a cough from the other room woke me (my daughter has bad cold). The breathing pattern (Inhale/Exhale) of the machine was a bit higher than I'm used to, but tolerable. Back to sleep I went and woke a while later to our house alarm "door ding" when the basement door was opened to feed the dogs. Hmmm...30 minutes had gone by. Went back to sleep for another 30 minutes or so and was GENTLY awoken by my daughter, asking me what time she should start dinner.

I am cautiously optimistic. I'll report back tomorrow after using it all night (with water in the humidifier - nap I turned the humidifier off since no water in it).

[JohnBFisher]

Here's hoping your trial period will do well. You will find that the mask *will* leak. It is almost ascertained since you have very shallow breathing. The strong change in pressure (when the inhalation pressure increases dramatically to ascertain your ventilation) will blow out just about any seal. If you go this route, you might need to purchase mask liners to help minimize the leaking (along with the squeaking and squawking) from the mask.

Best wishes!

[Kiralynx]

Madalot,

I've been following your saga, though have rarely had anything to say. <fingers crossed> for you that this works. I love my ASV.

[DoriC]

Maddy, hope you're in a restful sleep by now. We'll all be waiting for a report!

[Madalot]

Maddy, hope you're in a restful sleep by now. We'll all be waiting for a report!

Not yet, but very soon.

Thanks for the good wishes. I will post in the morning.

[snuginarug]

Got my fingers crossed... I can't wait to hear from you in the morning!

[Madalot]

First night report --

Overall, not bad. Of all the machines I've tested (AVAPS, VPAP Auto, ASV) the ASV is my favorite so far.

I had trouble falling asleep, but I don't think the ASV was the main reason. I'm not used to a humidifier and had a bit of rainout, but I can fix that. I was too lazy last night to sit up and fix it. I woke up about as much as on the vent. I noticed differences in the IPAP at different times, sometimes amazed at how high the pressure was, but the mask held up fine. I was grateful for that.

The on-screen data looks FABULOUS, but the card is empty. I'm hoping the machine just hasn't written it to the card yet.

It's too soon to know how the ASV will affect my daytime situation.

I can obviously sleep okay on this machine and plan to take full advantage of this week long trial.

[HoseCrusher]

Well, you made it through the first night. Now you can see if you can make it through the first day...

I find it interesting that the different breathing patterns offered by the different machines effect you in ways that you can notice. This takes breathing to a new level. It isn't just taking air in and blowing it out...

It is good to hear that while you are sleeping you are breathing "in style..."

[Pugsy]

These PR S1 machines write the data to the card pretty quickly. Like in within just a few minutes of turning off the machine. Check to make sure card is inserted fully and let machine try to "find" it again and see if it will then write to the SD card.
Make sure SD card isn't in write protect mode.
Finally....try a different SD card.

[Madalot]

The problem is with the software, but most likely it's me being stupid.

I have a profile in Sleepyhead for my husband and the program has remembered the location to pull the data (which is off the card from a reader). For some reason, MY profile is asking for a location and I can't figure out how/where to tell it to find it - every place I tell it says there's no data.

If I use my HUSBAND'S profile and load the card, it finds it and uploads the data.

So, I have data, but it lists my hubby as the user.

[Pugsy]

Under your user profile...create a new location to import the data from...make sure you only choose the drive letter where the SD card is sitting and NOT the folder itself. If you have anything in the little box other than the drive letter..you have gone to far.
So create a new location to pull the data from and make sure you don't go too far then save that location.

[Madalot]

Under your user profile...create a new location to import the data from...make sure you only choose the drive letter where the SD card is sitting and NOT the folder itself. If you have anything in the little box other than the drive letter..you have gone to far.
So create a new location to pull the data from and make sure you don't go too far then save that location.

Thank You! I figured it was ME being stupid.

All better now...

Oh -- last night's data looks fabulous. AHI of 0.5 -- tidal volume and minute ventilation are in line.

The ONE big difference I can see is that the average EPAP is lower than what I am using on the ventilator. Let's see what a couple more days say...