Bipap and appetite questions

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phyllis2714

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Joined
Feb 24, 2023
Messages
5
Reason
Loved one DX
Diagnosis
01/2023
Country
US
State
NM
City
Las Cruces
Hello, my mother is recently diagnosed and we have many questions. She is having a very hard time adjusting to the bipap and can't seem to stand it to be on more than 18 mins. We are wondering if anyone uses the nose only mask and if so if that might help her adjust? Breathing is already quite difficult.

Also, she has very little appetite now and says she is full after just a few bits. Any suggestions how to improve that?

Thank you for any guidance!
 
Hi Phyllis, and welcome.

Many PALS use a nose-only mask. My husband, even with a deviated septum and nasal polyps, did, to the end after starting on full face masks before the mask below was available.

cpap.com has many masks with 30-day return privileges. Have a look at the Circadiance Advance mask, the lightest around, which comes in small or regular sizes and is on sale right now, as it happens. If you try it, I would also get the "featherweight tube" for less pulling on her face.

As you will have read, trying to log more minutes while on the computer, watching TV, etc. can make it less intrusive.

Often, if she is not breathing well, that takes up the energy that her body would normally spend in eating/digesting. So supporting her breathing would be the logical first thing. Hydration is really important too, so having a glass or cup of whatever she tolerates best always at hand is good.

Often, when starting on BiPAP, the settings need to be adjusted as well. I will PM you about that.

Best,
Laurie
 
Hello Laurie,
Thank you again for your guidance. We are now hearing that she should be on Trilogy instead of a bipap. Are you familiar with that?
 
Yes, that is essentially a portable BiPAP (rechargeable battery) with a few extra features. Many PALS here use either a Trilogy (Respironics) or Astral (ResMed). If you have a choice, I would ask for the Astral.

The PM I sent you applies to the AirCurve, and there's no reason not to adjust that to its best settings, and then we can use those to inform setting up the Trilogy or Astral.
 
Thank you again. The doctor suggested the Trilogy and didn't mention Astral. should I ask about that instead? I realize we never sent the settings. I will follow up on that as well.
 
It never hurts to ask. Respironics has more contracts, but is an inferior brand. It is the DME firm that supplies the machine, and they have different contracts, some exclusive and some not. Usually there is more than one DME in your mom's network but the clinic will have one that they prefer. You are not obligated to use anyone's favorite DME(s). It's like going to a different store to get the brand you want.
 
Welcome Phyllis2714. I love Las Cruces! Sorry that you have the need to be here.
 
OK, I made a post elsewhere, and I may NOT have the full info. I do not like disinfo.
The tech for my PALS Trilogy stated someone had reset the settings and told me that they set the settings per the Doctor's orders an RX if you will. No, it appears from the conversation going on here that. Now, you (it seems to me) that you have shared the settings to allow a person to set a replacement Astral (over a Trilogy) But elsewhere I got the impression these are not BiPAPs. Am I missing something here?

Thanks
 
In ALS, Astrals and Trilogies are just BiPAPs with internal, swappable rechargeable batteries and a few extra features past home A/C BiPAPs depending on the model. So many but not all PALS end up with one of these (there are a few other brands worldwide) because they want to go outside the home with them.

The portable machines can also be used to support PALS who obtain trachs and people with other diseases that affect breathing, that need machines more than at home, or who may use settings more suitable for someone who cannot contribute to their own breathing at all. Home BiPAPs don't have the horsepower to support the latter.

I am not sure what the second part of your question means, but there is no law against adjusting settings. It's required that settings be specified in the initial rx, but no doctor or RT can possibly know that they are best for someone in advance. It's not like glasses or hearing aids. It's more like throwing a dart.

Past the initial rx, just like using more or less of a drug depending on your symptoms, the settings are in your hands, if you want them to be.

Our system unfortunately is not built for supporting xPAP post-sale, including limited community college enrollment in RT programs. But that is a whole different subject.

Neither I nor anyone who advocates responsible titration of settings believes in random exploration, which could be dangerous, just like deciding to triple-dose Ambien on a whim. Instead, we provide education so that such titration can be performed safely and effectively. It is a progressive disease, and settings should not be set and forget, either in everyday life or emergencies. It's sad that most people know more about how to adjust their microwaves than their respiratory support.

I am always happy to help anyone control their BiPAP. And for those interested, there is a two-page "BiPAP Basics" document on my profile. I am also working on a sticky that will loop in pulmonary testing, but there is no straight line between testing and settings at all.

Best,
Laurie
 
Our pulmonologist and our RT cautioned us against adjusting settings on our own.
 
Again, if you were going to jack IPAP max from 15 to 30 or something, that would be risky. Rational titration is not, and there are several settings that only the P/CALS even can titrate to comfort, such as AVAPS rate, trigger/cycle/Ti. Literally, that would be like the car dealer telling you what your speed should be on the freeway today. One adapts to conditions.

And, for 95% of the P/CALS I help out, PALS actually need lower pressure settings than those initially prescribed (the published Vt/Va algorithms have never been/couldn't be validated for ALS or any neuromuscular disease). No one's blowing out their lungs via experimentation. That is a dangerous professional conceit. Not to mention, in coughing/choking, attempting to stay with the same settings could exacerbate mucus/saliva/aspiration.
 
I had a situation about a year ago or so where Laurie recommended a very slight change to the vent. I approached the RT about this and he did contortions with his ego that someone could be suggesting other settings. He even told me he had a supervisor. I said nothing. I stayed firm and asked what he thought about the change in the setting. He calmed down and began to think. He agreed the change was reasonable but said he wanted to keep it where it was because he thought the setting the machine was at helped to fight pneumonia a little better. We were talking about a 1 number difference and my PALS was comfortable with the settings. I decided to go with what he was saying. But I feel he understood that if there ever was a problem with my Pal's comfort in the future he would have to consider Laurie's recommendations.
 
I didn't mean for it to be personal. 2 people, one an MD, told us they'd advise against adjusting it ourselves. They also asked PALS his opinion on which settings seemed to work well for him, so I don't think either was acting out of "conceit."
 
I didn't mean personal conceit. I meant the conceit [illusion of superior knowledge] of the dealer setting your highway speed, when you brake, when you change lanes, etc. It just isn't possible to attain pinpoint accuracy except by chance. And enabling that illusion hurts a lot of people that deserve better--I have an inbox full of them. Some, I manage to improve their comfort just before they die. They had years of suffering for no reason.

Anyway, on and off the forums, I have helped several MD P/CALS, as well as myopathy and SCI pts with settings. Larry's docs approved wholeheartedly. I am only sending the ball back because this disease is bad enough without black boxes with sharp edges. You can choose cruise control, for sure, but know that it absolutely is a choice.

Please let me know if you need any further help, Phyllis.
 
I don't subscribe to black boxes with sharp edges. I want people to consider my truth, which is that 2 unrelated medical professionals advised against us changing settings on our own. Phyllis, I apologize for interrupting your post about concerns for your mother.
 
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