Ventilator Changes - The Latest Update

Hueffenhardt wrote:That is too bad, Madalot. Hopefully, it will be an easy fix for your RT, and you'll be able to really give SIMV a full night's test run.

By the way, I love your avatar. Those cats are adorable.

Thank you Hueffenhardt and welcome to the board! I'm not sure exactly what the RT will to do fix this, but if anybody can fix it, I think he can. He knows my ventilator inside and out which my previous RT did not. And he's about a nice as a person can be. I hate to bother him over the weekend, but will drop him an email in a bit and see what he says.

If not for the alarm, I would have tried the settings as he recommended. But it was WEIRD feeling compared to what I'm used to. I think part of the "weirdness" is that this mode is more machine generated breathing than what I'm used to. Might be good once I'm asleep, but when I'm awake breathing on my own, not very comfortable.

I'm wondering if I would be better off, for now, trying a basic bipap mode with timed backup rate. If nothing else, just to get a couple nights of uninterrupted sleep. Or maybe it's time to consider dual prescriptions and set up something basic until I fall alseep, then switch to these more advanced settings during the wee hours.

But, it's not up to me to decide.

I think -SWS (a long-time poster here) has nicknamed them "Sink Kitties" and really likes them too. I rotate my avatars a lot, sometimes using pictures of my cats (these are not) or other animals. But I usually end up putting Sink Kitties back because people really seem to like them. They are cute.

Madalot,

So sorry to hear the new settings immediately caused problems that could not be lived with even long enough to give it the old college try so to speak.

I really do hope your RT can come up with some kind of ideas to address the alarm problem or other new idea altogether for you to try. What you've been describing is mind numbing.

And with the help of a 5mg Ambien last night, I did find an almost uninterrupted 5 1/2 hours of sleep last night---I'll look under my bed to see if I can find another one hiding there and send it to you if I do ...

Good luck,
robysue

robysue wrote:Madalot,

So sorry to hear the new settings immediately caused problems that could not be lived with even long enough to give it the old college try so to speak.

I really do hope your RT can come up with some kind of ideas to address the alarm problem or other new idea altogether for you to try. What you've been describing is mind numbing.

And with the help of a 5mg Ambien last night, I did find an almost uninterrupted 5 1/2 hours of sleep last night---I'll look under my bed to see if I can find another one hiding there and send it to you if I do ...

Good luck,
robysue

Hey! I'm glad you found a few hours last night!! That's good.

I have no trouble falling asleep and would stay asleep longer if not for the ventilator kicking up pressure so high. And there's no doubt that alarms would keep me up all night!

I have sent an email this morning and if I know this RT, he'll reply today sometime. But we'll see what he says. Maybe he has some "tweaking" suggestions that will resolve this.

Madalot wrote:The feeling of SIMV mode was weird.

PC-SIMV is weirder. Is 'weider' a word?

Banned wrote:

Madalot wrote:The feeling of SIMV mode was weird.

PC-SIMV is weirder. Is 'weider' a word?

I don't know, but for purposes of this discussion, "weirder" works for me.

I tried all this again this morning, realizing that some other settings had reverted by changing the mode to SIMV, a fact I didn't notice last night. I tried it again, with the revised settings, but had the same problem.

However, I accidently found a way to mute the alarm SOUND. Hmmm....if it's not a huge deal and the RT wants me to, I could give the new settings a try tonight and mute the alarm sound. The red flashing might drive me nuts, but I could try to face away from it so bothers me as little as possible.

I emailed the additional info to him a bit ago and will hope to hear from him. I don't know how concerning it is to have the "Low Inspiratory Pressure" alarm going off constantly, so I think I'd want to hear from him one way or the other.

Best wishes to you, Madalot. I know what an ongoing struggle this has been for you, and what a challenge it must be since your condition is ever-changing. I'm so glad that you finally have a competent and caring RT! I hope that things get sorted out quickly so you can get some much-needed rest.

DreamOn wrote:Best wishes to you, Madalot. I know what an ongoing struggle this has been for you, and what a challenge it must be since your condition is ever-changing. I'm so glad that you finally have a competent and caring RT! I hope that things get sorted out quickly so you can get some much-needed rest.

Thank you. I appreciate the good thoughts. I wish my siutation were more straight forward and easier to figure out. This trial and error stuff wrecks havoc on me in every aspect of my life.

Madalot, hope you hear from the RT soon. This must be beyond frustrating for you. Keeping my fingers crossed, you are in my thoughts.

Linda

P.S.--i think it's spelled wierder (the i before e thing) and it is a word in my house, also

Tired Linda wrote:Madalot, hope you hear from the RT soon. This must be beyond frustrating for you. Keeping my fingers crossed, you are in my thoughts.

Linda

P.S.--i think it's spelled wierder (the i before e thing) and it is a word in my house, also

Thanks for the thoughts. I haven't heard yet and because it's Saturday, I might not. It's hard to be angry about it because he's gone above and beyond. Plus, he isn't working for my DME. He's doing this as a favor to help us out.

If I don't hear, I'll probably just use the AVAPS settings this weekend since I don't know how serious the Low Inspiratory Pressure problem is for me. And using nothing isn't a great option since I have trouble breathing as soon as I lay down.

The spelling prompted me to look it up! It actually is weird -- it's one of those words that breaks the rules for no apparent reason. You definitely got me thinking because after you wrote that, I wasn't sure myself!!

Madalot wrote:The spelling prompted me to look it up! It actually is weird -- it's one of those words that breaks the rules for no apparent reason. You definitely got me thinking because after you wrote that, I wasn't sure myself!!

Now that I see it in bold, I was wrong.

Madalot wrote:... The spelling prompted me to look it up! It actually is weird -- it's one of those words that breaks the rules for no apparent reason. You definitely got me thinking because after you wrote that, I wasn't sure myself!!

A trick to remeber is the weird is ... well ... weird!

Since I never heard back from the RT or DME yesterday about the SIMV settings, I have reverted back to my old AVAPS settings and used them the last two nights.

Unless they have another idea for better settings, I may need to accept that AVAPS is the best we can do right now and even though the pressure wakes me up half the night, that may just be the way it's going to be.

I debated about just not using the vent at all, but I recognize that my breathing is strained and difficult while I'm still watching TV, so I'd just be torturing myself. It's better that I use it, get the air and deal with the high pressure as best I can.

It is what it is.

Madalot wrote: It is what it is.

Same pile, different shovel?

Madalot wrote: It's better that I use it, get the air and deal with the high pressure as best I can.

It is what it is.

*sigh*

Sending hugs your way. And hoping that on Monday morning the RT has some ideas on what to do about the alarm that keeps going off that prevents you from trying the other idea.