Questions about BiPAP/Vent

Ken15

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Yes, there are multiple modes like PC (all breaths timed) and T (all breaths machine-controlled) that provide more machine intervention than the S/T that most PALS without trachs do best with.
After multi-disciplinary clinic pulmonary tests, my PALS received a Trilogy this past week while at the Mayo (FL). The tech put it in PC mode. She does not have a trach. How do we know if this is the best mode for her?

Ken
 

lgelb

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Most likely PC is not ideal -- it is not for most PALS, as I said. If you want to brainstorm the logic based on her history, and test the hypothesis that a less regimented approach would work better, I'll PM you my email.

Best,
Laurie
 

KimT

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Steve,

FWIW, My RT said that when I got my PWC, I qualified for TWO Trilogies, all paid for my Medicare and my supplement. Of course, I refused but check into your insurance to see if that's the case with you.

Hope you're doing well. You're in my prayers.
 

swalker

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It has been almost 3 months since I started down the path of getting a ventilator from August 20 to November 14). What a ride it has been!

The initial order was lost by the doctor's office for a week. The DME messed up and changed the order to different equipment. There were delays, delays, and more delays. We left for vacation without the ventilator and were gone for a month. When we returned everything was set up and we were supposed to get the ventilator delivered before our next trip. Of course, we had a major winter storm move in and the pass was closed, so we had to reschedule until after that second trip.

When they finally showed up with the correct ventilator, we discovered the power cord was missing. So, we could play around with it for a few hours, but that was it. The power cord was delivered by the end of the week and we finally started working on getting settings in place that were right for me.

The respiratory therapist was very hesitant to change settings without permission from the doctor's office. Fortunately, the doctor, his PA, and the respiratory therapist have all worked together for many years. The doctor's office gave the respiratory therapist permission to make any changes she deemed appropriate.

I tried using the ventilator for brief stints and found that whenever i discontinued using it, it would be several minutes before I could breathe again. We have adjusted the settings, hoping that we can resolve this. The current settings might work, but I have not tested them.

When I use the ventilator, I am wiped out the next day. It takes about 10 minutes to be able to breathe normally (for me) after I discontinue use of the ventilator. During that time, my O2 saturation drops below 75%. My diaphragm then goes through a period of spasms for the next several hours. All of this leaves me exhausted with the next day being a recovery day where I can't do much.

We have adjusted the settings quite a bit, but I have not had a chance to test them yet (always had something pressing the next day, so could not take the chance that I would need it to be a recovery day).

The respiratory therapist is coming again tomorrow to try some new settings. Hopefully, we will get this sorted out soon and the ventilator will be a positive rather than a negative.

When I am using it, it is glorious. It just makes it so much easier to breathe!

Steve
 

KateEmerson

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Sorry to hear you're still having problems with the Bipap Steve. Hoping tomorrow goes better. Kate
 

swalker

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The respiratory therapist came today to adjust settings on the ventilator.

The result is that it is very comfortable to use the ventilator. It really relieves the stress and strain from my breathing muscles when I let it do the work.

Unfortunately, I still have problems starting to breathe on my own when I stop using the ventilator. I used it for 10 minutes and when I stopped, I could not breathe for about 1 to 2 minutes (felt like forever, of course). I slowly started breathing again on my own and after 10 minutes, I was back to something like my normal breathing. I was on oxygen during these 10 minutes, and my oxygen saturation only dropped to 80% before recovering into the low 90s/upper 80s. The bad news is that my diaphragm was spasming and cramping for the next 4 hours. That is very uncomfortable, causing quite a bit of distress.

The respiratory therapist also delivered a cough assist machine (Resmed T70), but we were unable to try it out because of my spasming diaphragm.

The plan is to continue using the ventilator for short periods (less than 1 hour per session) and see if I start recovering my ability to breathe better as I get more used to it.

My fear is that if I use it more (such as overnight), I could become dependent on it for breathing and wind up having to use it 24/7.

Steve
 

blitzc

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Steve, I'm so glad to hear you are receiving the assistance you need from your respiratory therapist. As many others here have taught me, be relentless - don't give up until you feel comfortable and educated.
 

Kristina1

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Wow this sounds so stressful and scary. Have you talked to your pulmonologist about it? Maybe this is an issue that needs more expertise than the RT has.
 

KateEmerson

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My husband was trached/vented/ 24/7 from day one but even being vent dependent he could if needed come off the vent for10 or 20 minutes without any problem initiating his own breathing. I agree with Kristina that you may need someone with more expertise whether it's the pulmonologist or more expierenced RT. Something doesn't sound right.
 

ReginaS

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The advice on the trilogy settings that I got from Laurie here in this group was always most helpful. I don't know what we would have done without her.
I had to make sure that our device stayed unlocked and that I could change/update the settings.
 

Nuts

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Steve,

FWIW, My RT said that when I got my PWC, I qualified for TWO Trilogies, all paid for my Medicare and my supplement. Of course, I refused but check into your insurance to see if that's the case with you.

Hope you're doing well. You're in my prayers.
Kim, I'm just checking in and catching up a bit, and this worries me. The second Trilogy is a backup in case the first on goes out. That happened to us on a trip to Florida--it just stopped working and it took 48 hours to get a new one delivered to us. Since I haven't been around, I don't know your current situation, but if you are at all dependent upon the Trilogy PLEASE get the backup.
 

affected

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Becky, Kim isn't on bipap at all still :)
 

swalker

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The new settings for the ventilator are helping out. When using the ventilator for a short time (less than an hour), I have been able to work my way off of it without stopping breathing.

However, I still have considerable spasms and cramping in my diaphragm for several hours after discontinuing the vent. If anyone has any insights to what might be contributing to this, I would welcome your input.

Steve
 

lgelb

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Steve, I continue to believe that likely your settings are giving the machine too many of the reins, and/or there is a cycle synchronization issue. If you send the settings to me, I could be more helpful.

Best,
Laurie
 
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