Ventilator Downloads - Input Requested Pls.

HoseCrusher wrote:You're fine.

Works for me!

I'm increasing my epap again tonight (to 10) and will be using the monitor overnight. Hopefully that, too, will be fine.

I am still contending that the higher pressures are at least partly responsible for my awakenings and I'm trying to find a way to set the minimum IPAP higher so that I can adjust to it and maybe not wake up quite so much (if the pressure is already high, maybe it won't disturb me as much). I tried setting the IPAP at 17 and could not deal with it to fall asleep. Because this machine won't let me set the Ramp any higher than the epap (which at 6 was way to low for me to breathe), we're trying to increase the epap slowly, so that I can try to use the Ramp to get up to 17 gradually. Make sense? LOL

Anyway -- I increased the epap to 10 last night after staying at 9 for about 6 days. That was TOUGH and I struggled with it. I ALMOST put it back to 9, but decided to give it more time. I finally did fall asleep with it, but even this morning, my chest feels "tired" like it was more difficult to exhale against 10.

The ventilator download and overnight pulse ox look okay, so I won't bother taking up time or space to post them (unless someone asks me to).

The question comes up now (for me) -- should I keep trying to increase the epap up to about 12 or go ahead and give the Ramp a shot now at 10 (after a few days to adjust to it as the epap)? I'm not sure, but I was hoping to get the epap up to about 12, but after last night, I'm not sure how much higher I can safely go with that. I'll have to figure it out and decide I suppose.

In the interim, my neurologist's office called yesterday (The Fellow again) and it was HIS last day and I could tell he was rushed and stressed. I did have a few questions to ask, but decided trying to ask him was pointless as he was finishing everything up. I DID tell him to go ahead and make a referral to a neurologist that specializes in sleep medicine at HIS facility. I'm not sure about that yet, but I figured he could go ahead and make the referral.

I will point out that physical discomfort is a "sign." You will have to figure out if it is a good sign or a bad sign.

The reason I bring this up is that with some muscle wasting issues stressing to the point of discomfort is not recommended. It can actually break down muscle tone and the body may not be able to rebuild. I don't know if that is the case with you, but feel that you should at least consider it.

HoseCrusher wrote:I will point out that physical discomfort is a "sign." You will have to figure out if it is a good sign or a bad sign.

The reason I bring this up is that with some muscle wasting issues stressing to the point of discomfort is not recommended. It can actually break down muscle tone and the body may not be able to rebuild. I don't know if that is the case with you, but feel that you should at least consider it.

There is no doubt that I need to take this "sign" seriously. If I had to guess, I'd say it's a bad sign. I'm still feeling, uh, stressed (breathing wise) now 4 hours after getting up and off the machine.

Because they still do not know exactly what neuromuscular disease (or gene defect) is at work here, I HAVE to pay attention. If history is any indication, stressing my muscles to the point of discomfort is a very bad thing. Walking too much, doing too much, stress my muscles to the point that they stop working completely. I'm sure that the diaphragm muscles are no exception.

But...If we cannot make this work (ie get the epap enough to try to use the Ramp), we are out of ideas to solve my problem.

I know I asked them to go ahead and make the referral to the Sleep Neurologist, but I'm almost too tired to start over with another doctor.

:::sigh::: Nothing is ever easy with me. Nothing.

Keep in mind that 9.5 may be an option. You may not be able to handle big jumps, but may be able to sneak up on it.

I am glad you are considering this carefully. I have a friend that goes through great pains to limit his exercise to eliminate muscle break down. If he feels great fatigue, he has gone to far. His issue is that once the muscle breaks down, it doesn't repair. I don't think your issues are the same, but who knows for sure. That is why I raised the caution.

If I may be so bold... It may be time to step back, take in the "big picture," pause to "smell the roses," and realize that good things may take many little steps rather than normal strides.

If I remember correctly, Maddie's vent only allows changes in increments of one, not 0.5, I believe that is why she is going up to 10 from 9.

Madalot wrote:Okay -- here we go. I sometimes have problems with the right side of my stuff being cut off and I haven't figured out how to fix it.

I think it has to do with the image size you are using when uploading to Photobucket. Try sizing your images to 130px x 160 px before uploading. Send me a PM if you have any questions about how to do that. I don't know if I'll be able to answer them, but I'll try!

Deborah

jbn3boys wrote:If I remember correctly, Maddie's vent only allows changes in increments of one, not 0.5, I believe that is why she is going up to 10 from 9.

For IPAP/EPAP, this is correct. Only changes by whole numbers, so going in smaller increments isn't possible.

Paper_Nanny wrote:

Madalot wrote:Okay -- here we go. I sometimes have problems with the right side of my stuff being cut off and I haven't figured out how to fix it.

I think it has to do with the image size you are using when uploading to Photobucket. Try sizing your images to 130px x 160 px before uploading. Send me a PM if you have any questions about how to do that. I don't know if I'll be able to answer them, but I'll try!

Thanks for this. I think I tried doing this before (making the images smaller) and when I did that (even slightly) the upload was so small you couldn't see it.

I decided to give the Ramp idea a try last night, even though I'd only been at EPAP of 10 for one night. This worked okay, but EPAP of 10 is UNCOMFORTABLE and made my chest hurt, not to mention that starting at an IPAP of 10 is also UNCOMFORTABLE, but I made it through the night, re-starting the Ramp once during the night and once more earlier in the morning.

The download wasn't much different than before and the only difference with the overnight pulse ox was a low of 91%, but it wasn't low enough (or long enough) to constitute a desaturation.

As far as the reports are concerned, it wasn't a bad night. But I feel horrible this morning. I'm very tired, cranky and my chest is tight and borderline hurts.

It's too bad that the machine won't allow the Ramp to start any higher than the EPAP (can we say 'stupid'???). If I could leave the EPAP around 8, but get the Ramp to start around 12-13 and gradually Ramp up to 17, it just might work. But no, this machine won't allow me to do that.

I have a question into the DME to see if I can find out IF when I get my Trilogy back (if I ever do) is this something that might have been changed with the upgrade. Being a holiday weekend, naturally I didn't get an answer.

I don't know what direction to take tonight. Maybe I'll just set everything back to my original settings and leave them. The EPAP at 10 is really hard on me, but there's no way I can handle a starting IPAP any lower (I barely handled the 10).

Madalot wrote:It's too bad that the machine won't allow the Ramp to start any higher than the EPAP (can we say 'stupid'???). If I could leave the EPAP around 8, but get the Ramp to start around 12-13 and gradually Ramp up to 17, it just might work. But no, this machine won't allow me to do that.

As far as I know...

I don't think any bilevel machine will allow a Ramp start pressure to be set higher than EPAP (the lower of the two pressure settings...EPAP/IPAP.)

Likewise with autopaps -- I don't think a Ramp start pressure can be set higher than the minimum pressure setting in the min/max pressures range.

rested gal wrote:

Madalot wrote:It's too bad that the machine won't allow the Ramp to start any higher than the EPAP (can we say 'stupid'???). If I could leave the EPAP around 8, but get the Ramp to start around 12-13 and gradually Ramp up to 17, it just might work. But no, this machine won't allow me to do that.

As far as I know...

I don't think any bilevel machine will allow a Ramp start pressure to be set higher than EPAP (the lower of the two pressure settings...EPAP/IPAP.)

Nor will an autopap allow the Ramp start pressure to be set higher than the minimum pressure (in the min/max pressure range settings.)

I wasn't aware of this and appreciate your telling me. Thanks.

Unless I can cope with the higher epap (and if today is any indication I cannot) -- this isn't going to work.

Madalot wrote:Okay -- here we go. I sometimes have problems with the right side of my stuff being cut off and I haven't figured out how to fix it.

Paper_Nanny wrote:I think it has to do with the image size you are using when uploading to Photobucket. Try sizing your images to 130px x 160 px before uploading. Send me a PM if you have any questions about how to do that. I don't know if I'll be able to answer them, but I'll try!

Thanks for this. I think I tried doing this before (making the images smaller) and when I did that (even slightly) the upload was so small you couldn't see it.

In PhotoBucket, if you hover over your picture, you will get a menu below it. Click on Edit. (or simply click on your picture.) It will open the picture on it's own page. Then above the picture, click on Resize. I usually use the "preset sizes" option, and go for medium or large (somewhere around 640x480 or 800x600). (If you click on the picture (instead of edit), when you click on resize, it will give you the preset options automatically.) The nice thing is, you can change the size, see how it looks on your post, and then go back and change the size if it doesn't work. Is that as clear as mud?

Madalot wrote: It's too bad that the machine won't allow the Ramp to start any higher than the EPAP (can we say 'stupid'???). If I could leave the EPAP around 8, but get the Ramp to start around 12-13 and gradually Ramp up to 17, it just might work. But no, this machine won't allow me to do that.

I have a question into the DME to see if I can find out IF when I get my Trilogy back (if I ever do) is this something that might have been changed with the upgrade. Being a holiday weekend, naturally I didn't get an answer.

That is exactly what I was hoping!

rested gal wrote: As far as I know...

I don't think any bilevel machine will allow a Ramp start pressure to be set higher than EPAP (the lower of the two pressure settings...EPAP/IPAP.)

Nor will an autopap allow the Ramp start pressure to be set higher than the minimum pressure (in the min/max pressure range settings.)

Here's hoping that ventilators are different than bilevels. Maybe with a ventilator, and the newer updates, it might be possible. I hope so for Maddie's sake!

Madalot wrote: I don't know what direction to take tonight. Maybe I'll just set everything back to my original settings and leave them. The EPAP at 10 is really hard on me, but there's no way I can handle a starting IPAP any lower (I barely handled the 10).

It's too late for last night, but I guess I would try just backing up a day or two, and use an EPAP of 9.

I use Photobucket and have tried everything (including resizing) and for whatever reason, nothing I do fixes the problem. What's even more strange is that the Preview shows it displaying perfectly, but once I hit submit, it doesn't show right anymore.

Right now, I'm too tired and feel too lousy to worry about it.

I've reset all my settings to regular (except I put the EPAP at 8 instead of 6). The last two nights, despite what the vent download & overnight pulse ox reports may say, have turned me into an emotional, borderline blubbering idiot that has no tolerance for anything. My family can't look at me right now that it doesn't irritate me.

I can't go on like this. Even though the "regular" settings weren't ideal, it was better than this.

This just sucks.

Regarding the report image that I see. It is fine on my end. Nothing is cut off on the right side. In fact plenty of room on right side at least on what I see.

Maddie, I think you are on the right track! Taking charge and making changes slowly. For you maybe you have to go a little slowing on the increase. I would try...napping with the increase...and sleeping with the lower setting. Giving the body a change to adjust. Maybe even having to alternate nights at the higher pressure.

I know when I started CPAP...I was sore for about two weeks. felt like my chest muscles were going to pop! lol

I have to agree about over stressing the muscles.

msradar65 wrote:Maddie, I think you are on the right track! Taking charge and making changes slowly. For you maybe you have to go a little slowing on the increase. I would try...napping with the increase...and sleeping with the lower setting. Giving the body a change to adjust. Maybe even having to alternate nights at the higher pressure.

I know when I started CPAP...I was sore for about two weeks. felt like my chest muscles were going to pop! lol

I have to agree about over stressing the muscles.

I deal with high IPAP pressures nightly and they don't cause chest muscle problems. This has got to be from trying to exhale against the higher epap -- I can't handle it.

Unfortunately, my plan isn't going to work if I can't deal with the higher epap. I had trouble at 9, so I stayed there a week to adjust to it, but at 10, it's too much. However, even at 10, starting the IPAP at that with the Ramp is too low for me to breathe easily.

I really hoped this would at least help some, but if I can't get the epap high enough to use as a minimum ipap, I need to bag this idea.

Problem is -- I'm out of ideas. I don't know what else to try.