Breathing challenge

[KW1234]

Starting to have episodes where I want to inhale but the muscles aren't responding. I still have about 40 percent lung capacity and use the AVAP all night and several hours during the day but even when it tries to force a breath, my lungs don't always respond. I suspect the end draws near.

 

[azgirl]

I'm having that exact same experience. I was wondering if my settings needed adjusted or if it really is the end of the road.

 

[lgelb]

If you are still interacting here, most likely your settings can be improved. Please feel free to post/PM me your current settings and how the machine is not supporting how you want to breathe in terms of:

Breaths -- too short, long, deep, shallow, just right
Time between breaths -- too long, short, just right
How fast air ramps up when breaths begin (too slow, too fast, just right)
How fast machine drops pressure to breathe out (too slow, too fast, just right)

Also, what is your gender/height/weight, your machine model and any pre-existing smoking or lung issues.

Best,
Laurie

 

[azgirl]

thanks Laurie, I will try to send you settings.
I think KW and I are describing the same thing. When it is time to inhale I often have to make a conscious effort to begin the inhale, and it seems to be happening more frequently.

I am still able to interact from bed with my eyegaze,. Thankful for that!

 

[KW1234]

Hi Laurie

Will have someone take pictures of settings. The pulmonologist just updated my settings. I don't think is an avap issue though. I think the neurons communicating with the muscles for breathing are failing. This is how my legs failed.

Curious if others have seen this.

-karen

 

[lgelb]

By adjusting trigger sensitivity, you can have the machine "begin" the breath earlier, so there is less effort on your part. It is often left at "auto trak," meaning it just follows your lead instead of taking the lead. Let me know what the settings are.

Yes, the motor neurons are dying, so worthwhile to make the muscles do as little work as possible.

 

[KW1234]

Hi Laurie

Screen shots of settings. I am female, 5ft 1inch, 128 lbs.

 

[KW1234]

4 more screen shots

 

[lgelb]

Hi, Karen, thanks for the pics.

You have a machine with fewer settings than the Trilogy, so a little harder to spruce them up, but I'm sure they can be improved.

To adjust settings, you may need to switch to provider mode (hold down knob/arrow while setup is highlighted on screen and wait for beep, enter 2nd setup menu)

The first thing I'd suggest may seem counterintuitive, but I'd change the mode to S (removing the backup rate as some people just don't do well in S/T mode, and most people don't need it esp. when awake). You can reinstate it for sleep as needed (if you do, I'd drop Ti to 1.3), but removing it will help determine the rest of the best settings -- a cleaner slate.

Next, I would try decreasing the rise time to match your breathing speed. Or if it seems you need it longer, you have room to take it past 5. (You may need to enable rise time setting, first.)

Lastly, I would reduce the Vte -- yours is likely higher than it needs to be. I'd back off to 200 and then ramp it back up based on your comfort. Again, that may seem counterintuitive, but when the machine tries to force more air than your musculature can handle, that can account for the lungs' seeming lack of response to the IPAP air flow.

Similarly, would drop IPAP min to 8 for now, to test the proposition that more may not always be needed. You can watch the monitor and see whether that is true or not (how high IPAP floor needs to be).

We can tweak further if needed.

Best,
Laurie

 

[Jlynn]

I've just been reading along here and it brought tears to my eyes. Laurie...you are an absolute angel! Having been the caregiver for my brother who passed on in September I remember being so grateful when somebody "lead" me when I needed help as it was all new to me. Listening to you all here just brought me back. This is a truly fantastic forum with some pretty awesome people. Bless you all.

 

[KarenNWendyn]

Ditto that on Laurie’s (and others’) helpfulness .

 

[KarenNWendyn]

Ditto that on Laurie’s (and others’) helpfulness .

 

[KW1234]

Laurie rocks!

 

[lgelb]

Aww...[blushing]

It is always a privilege to help. Just a reminder on the BiPAP/Trilogy front-- not everyone is comfortable posting settings/medical history in the forums, so feel free to PM/VM me for my email.

 

[KW1234]

Met with the pulmonologist this morning. I have been having air hunger episodes this week as well as the inhalation challenge. I will be starting hospice. They made more adjustments to my AVAP and prescribed morphine to help with my air hunger. My dancing day is coming soon.