Ventilator Downloads - Input Requested Pls.

Thank you! And I don't even pretend that I understand even half of what I'm looking at!

And on that note, here's more information to chew on a bit...with another day of download info...

Last night, I was in a "mood" and didn't want to go to bed, so I stayed up half the night chatting. I went to bed around 3:30 am (VERY late for me).

I did NOT fall asleep immediately,but it probably wasn't more than 10-15 minutes before I did. I woke up after about 20-30 minutes, but don't know why. Beyond that, I slept (or at least I think I did) straight through until 6:30, when my hubby got up and left. I told him I was NOT getting up and I went back to sleep. The next thing I knew (and I don't think I moved at all) it was 10:40.

Also, I am off of ALL the RLS medications...back to my normal stuff.

Here is the download from last night (told you I had arranged to get them on demand!).

I'm not certain I can add any wisdom to the information. However, I can raise questions.

I note your Patient Triggered Breathing could be a lot better. You might want to ask your doctor / RT if this low number is due to shallow breathing or failing to breathe. They may not "know" for certain, but should be able to speculate based on your sleep studies. I suspect the former.

However, that aside, I note that on the 28th you appear to have had little problem with PTB.

• Did you feel different before you went to sleep?
• Did you feel better when you awoke?
• Did you sleep soundly?
• Did you have a nap that afternoon?

Why do I ask? Well, if you can correlate any of the data to how you feel, then you might have that proverbial windsock you can monitor.

There is probably little you can do to control your PTB. However, if you find some activity that seems to decrease PTB (such as trying to do too much in one day), then you might learn how to manage your day to day like to maximize PTB, maintain vigor and optimize what you can accomplish without "burning out".

But again, this depends on if you can use PTB as your "windsock". So, I don't offer any insight, just more questions.

JohnBFisher wrote:But again, this depends on if you can use PTB as your "windsock". So, I don't offer any insight, just more questions.

Thank you so much, John. Your input/questions are so helpful to me...

I wish the download would be easier to correlate date/time. If someone that knows this software can tell me so I can tell them...it would be a lot easier for me if I could compare the dates/times more easily.

I've provided downloads dated June 26th - 29th. But...I think the date on the report is from the NEXT day...meaning the info from the 26th (Sunday) would actually be SATURDAY night's data???

Plus, when there's a short stint on the report that I said was a nap, that would probably be THAT day...The long data is from the night before and the nap would be THAT day.

So, I have provided info for Saturday - Tuesday nights.

See why I be confused??? The software downloads should be easier to manage the date/time.

On Sunday (26th) -- I didn't do much of anything but I DID take Nyquil that night. Remember my post about getting the best night's sleep in a long time? That was Sunday night.

On Monday (27th), I had a later than normal night as I had a visit from a relative. But I went to bed at my normal time (11:00 - 12:00) with no additional medications.

On Tuesday (28th) I didn't do much other than scan the reports and load them. No nap yesterday I'm sure (never made it) but I did stay up horribly late.

This is starting to make my head hurt to think about this...

Edited to add: I am going to email my doctor and ask her if the PTB issues are shallow or non breathing -- or if she knows...I'll let you know.

John's post made me realize that I need to keep better track of a few things...

I think now that I have regular access to my ventilator data, it's time to get out the old notebook and start writing down everything about my sleeping patterns, activities, medications, food, alcohol consumption, etc., and see if I can correlate a few things...

Madalot wrote:John's post made me realize that I need to keep better track of a few things...

I think now that I have regular access to my ventilator data, it's time to get out the old notebook and start writing down everything about my sleeping patterns, activities, medications, food, alcohol consumption, etc., and see if I can correlate a few things...

Excellent idea!

First of all a disclaimer...

This may be speculation, or it may have some basis in reality...

If I remember correctly, you wake up with the machine blowing air at a high pressure.

If you look at your pressure data, you see a pattern. If you look at your heart rate data from your oximeter, you see a similar pattern.

While it could be that your "vivid dream" is kicking your heart rate up which causes to drop off in your breathing which then causes the machine to blast you and the whole process wakes you up, I think something else is going on.

I think it would be good to go to the points where the pressure maxed and then backtrack a little from there. If you are waking up at max pressure, then looking just before max pressure is reached may help figure out what is going on. It is difficult to tell from your oximetry data if your heart rate fluctuations preceded lagged behind or ocurred at the same time as the pressure fluctuations. If you were able to find a way to get a better index of those data sets, you may be able to see further into the pattern.

At this point I guess i am just thinking out loud...

HoseCrusher wrote:First of all a disclaimer...

This may be speculation, or it may have some basis in reality...

If I remember correctly, you wake up with the machine blowing air at a high pressure.

If you look at your pressure data, you see a pattern. If you look at your heart rate data from your oximeter, you see a similar pattern.

While it could be that your "vivid dream" is kicking your heart rate up which causes to drop off in your breathing which then causes the machine to blast you and the whole process wakes you up, I think something else is going on.

I think it would be good to go to the points where the pressure maxed and then backtrack a little from there. If you are waking up at max pressure, then looking just before max pressure is reached may help figure out what is going on. It is difficult to tell from your oximetry data if your heart rate fluctuations preceded lagged behind or ocurred at the same time as the pressure fluctuations. If you were able to find a way to get a better index of those data sets, you may be able to see further into the pattern.

At this point I guess i am just thinking out loud...

Thanks for this, HoseCrusher. I would LOVE to be able to do what you suggest and if anyone can tell me how to fix the DirectView software so I can tell them, please do...

It seems silly to NOT be able to match up dates/times. My pulse ox software does and does it well. It's probably a simple adjustment in the DirectView program that they don't know how to handle.

I've asked several times, mainly because of those occasional pulsing episodes where the ventilator pulses at maximum and won't back down after I wake up -- I wanted to get an idea based on the time (since I knew when I woke up) but we never could match that occurrence in real time.

Another thing I want to mention, based on the questions John asked earlier. He asked if I knew (did my doctor know) if I was experiencing shallow breathing or not breathing. I thought about this on and off today (my doc hasn't replied yet) and something occurred to me.

Please bear in mind that I suffer from a problem that plagues a lot of us -- I frequently get conflicting information and don't know what or who to believe.

According to a source that I trust, the Trilogy Ventilator is so sensitive that it can sense even the most shallow of breathing. I am leaning towards believing this because there have been times that I was so sure I did not breath at all, yet it indicated a "patient triggered breath." Because of that, I tend to lean towards not breathing as opposed to the ventilator responding to too shallow breathing.

For now, I will keep adding to this thread if I have anything that might be relevant to it. If nothing else, my own continuing story might help me see something to read it here...

I don't have the download for last night yet, but it was very strange. I went to bed around midnight and did NOT fall asleep nicely like I usually do. I was casually dozing, not getting into a good sleep. I woke up from this light dozing sleep to pressure of over 19. Surprised me.

Another thing I've been noticing is that when I first get masked up and settled, the pressure it's giving me (maybe I'm just inhaling very deeply) is 15-16, even though my minimum is 14. This is new as it wasn't doing this before -- I was getting the minimum when I first masked up...

Hmmm...

My doctor just replied about the PTB's -- she said it could be either one (shallow or not breathing) and she said she isn't sure which it is.

Here's last night's download. I am thoroughly confused now. There is NO way I had made it to REM sleep so soon (I didn't even think I was asleep, but must have been dozing).

My son asked me to watch a movie with him this afternoon, so out of curiosity, I hooked up my pulse ox monitor just to see how things would look relaxing in my recliner, but not sleeping. For the first 1/3 to 1/2 of the time, I just had my feet up but was sitting upright. After that, I completely reclined, got really sleepy and almost fell asleep, but never did (I'm sure of it).



I never dropped below 93%, but it seems a little erratic to me. Plus, this is just about the same as my overnights on equipment. I would have thought that being awake and sitting up would have made this a lot better.

I think it looks fine. Probably all those shallow breaths...

HoseCrusher wrote:I think it looks fine. Probably all those shallow breaths...

That's good to hear - and thanks! I guess I was just hoping that awake and sitting up, it stay at 98 - 100 most of the time. I expect way too much I guess!

Oops, I may have posted too quickly...

I forgot that you were still a teenager... Your O2 levels while "reclining" should be at least 94%.

HoseCrusher wrote:Oops, I may have posted too quickly...

I forgot that you were still a teenager... Your O2 levels while "reclining" should be at least 94%.

What about sitting up straight (just with feet up)? I spent half of the time sitting upright - just with my feet up. Reclined, I dropped to 93%, but didn't stay there that long before I went back up to 94-96.

You're fine.

When I first got my oximeter I recorded my O2 levels while I was driving 400 miles one day. I was sitting up all the time and was surprised to see my O2 levels drop to 88% at times. As I recall, those events occurred while I was lost in thought and driving on a boring straight stretch of the road. It appears that my breathing just slowed down.

Now, when I drive, I make an effort to breathe a little more often. The last time I checked, my levels remained in the 94 - 98% range.