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diagnosed2016

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Apr 30, 2016
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190
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Lost a loved one
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07/2016
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US
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CA
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California
Had clinic day yesterday, first time in 5 months. Hubby has said he feels a little short of breath lying down so he wanted to check that out. Turns out his numbers have to plummeted since our last appt. he was over 100% and now is in the 70s. Very discouraging. RT said he needs to start using a trilogy. I really thought we had more time before that. So I know virtually nothing about them, about what to do or how it will work. Tips are appreciated.
PT said it looks like his ankles are getting really really weak and combined with his weak hips probably should do wheelchair assessment soon. He didn't want to do it yesterday.
Dr. Said he should up his antideppressant as he didn't seem very happy yesterday. Because he should be overjoyed to be told he needs breathing assistance and a wheelchair?! As we were leaving, Dr says smugly, " I hope you are able to tolerate the Radivica" (supposed to start in a couple weeks).
Just an overall shitty day.
I think we are done with clinic. We both dislike the Dr and they have literally messed up every prescription they've ever written. It's such a waste of time.
 
If you can give more details on your location, someone may have a clinic to recommend for you.

Re the Trilogy, is the doc ordering one? That's step one.
 
Yep, already in contact with the dme company and the request has been entered. We have 2 other clinics we could go to, but I think we are both questioning the need.
 
You certainly don't need a clinic, but if your husband is going to need a wheelchair order soon, I would find a seating clinic (PT or OT with a seating/positioning specialty) to work with the DME on that order, as good practice and Medicare mandate. There is at least a couple of months' lead time from starting the process to getting a chair.

You can find an ATP at RESNA's Web site.
 
While we are all different, 70% is a rather high number to be considering a trilogy. I could see perhaps a BiPAP for naps or sleeping at night. Like everyone else I can only share with you my own experience. My PT did not even order a BiPAP until I was right around 50%, perhaps a second opinion?

Good luck and God bless,

Tom
 
Thanks Tom, that's what I thought too. She wants him to use it at night and said it was good to start early and get used to it. It could be that she anticipates his number will continue to drop drastically and wants to be prepared but this is the first time his breathing has been anything other than normal, so it was surprising to us.
 
My sister had similar drop from 100 plus to 70 and was prescribed bipap at that point. There is thought that earlier bipap may be beneficial 50 is often the insurance cutoff for payment. Also without some kind of sleep study you don't know what is happening at night.

Where the numbers checked sitting and lying?
 
Just sitting
 
For most PALS, since most don't get trached, the Trilogy is just a BiPAP with an internal battery for getting out and about without requiring the machine to be plugged into an outlet. Since breathing deteriorates and more hours of BiPAP coverage are then needed, many docs jump straight to the Trilogy so as to just have one approval process, foreseeing the need for portability. ResMed's Astral has similar functionality.

That said, it never hurts to start with your own backup BiPAP if you can afford it, and if you don't go out that much, you can do without the Trilogy, as we did. [I only mention this because the monthly rental under Medicare is pricey and we would not have been able to fit in our building's elevator with the additional wheelchair depth of a BiPAP tray. Moreover, we didn't have to deal with a clueless DME; they are often not the best resource for titrating settings.]

We paid for our own gently-used VPAP (S9 ST-A) obtained through SecondWind and used a ~1 lb Z1 CPAP with internal battery and expiratory relief for transfers and going out, even when Larry was on continuous BiPAP. This would not be right for everyone but is illustrative of the options.

As to a 50% FVC cutoff, it is widely recognized that FVC is not always the best functional measure in ALS; however, any doc can write for BiPAP if/as reimbursement is not an issue, and by going to the mat with a payor, it may be possible to get reimbursement, if sought, before 50% is reached.
 
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I thought the trilogy is a bipap (but can be more)?

Starting early is really smart. I'm so sorry the doctor was such an ass, if only people realised what incredible people they are dealing with whenever they meet a PALS they would cry with shame.
 
You are correct in that the trilogy can be more than just a BiPAP. First of all of course as mentioned before it has batteries and can run 8 to 10 hours Without having to be plugged in. The trilogy has Two different modes, one is just a normal BiPAP setting, the other is called "sip and puff" this second mode allows for a straw to be attached to the machine And the PALS can simply draw extra puffs of air in order to get a deeper breath as needed.

A sleep study would be a good idea, also gettiing the BiPAP before it is really required will give your PALS time to get accustom to wearing a mask. I have three different masks,(I use the trilogy 24/7) one for regular daily use called "dream mask" the hose connects to the top of the mask and the air flows through the framework of the mask so I don't have a hose hanging down in front of my mouth, Makes eating and drinking much easier as well as is less frightening to children. I have a mask for my daytime nap, it is a full face because I am a mouth breather, but does not have the plastic strip that goes up to the fore head so that I can still wear my glasses. The third mask also fullface, and does have the plastic strip running up to the forehead for better sealing because I am also a side sleeper.

Hope this helps. Good luck and God bless,

Tom
 
Tom and all,

Any BiPAP can work in "sip 'n' puff" fashion with a plastic mouthpiece, the backup rate and volume control turned off.

In terms of capabilities, BiPAPs are not the same as the Trilogy, nor are all non-Trilogy BiPAPs the same, as only some have the "target volume" feature that is important in ALS. The Trilogy, Astral and other ventilators also have additional modes that allow them to be used "invasively" with a trach, have larger pressure ranges, etc. However, most PALS benefit from the battery rather than the other product differences.

A sleep study is a snapshot in time that is valuable for PAP uses such as primary obstructive sleep apnea but is not needed in ALS and can be misleading to the extent that the pulmo or RT thinks the settings that work in the study are "set and forget" settings. For maximum benefit and comfort, settings generally require tweaking throughout a PALS' life. However, a sleep study demonstrating significant apnea, more likely with a PALS lying down for hours, can be used to get a BiPAP reimbursed.
 
Thank you for the responses so far, this is all very helpful!
 
This comment very succinctly describes the difference between a BiPap unit and a Trilogy. This is NOT my writing. It is from this forum - somewhere in the past, and I'm not sure who the author was (please step up!?). Someone had questioned the use of a Trilogy vs. BiPap for their son. I have a very large, copy/paste document of tons of information/research/opinions that I have compiled in 2 years. It is from that "document" that I retrieved this. Author (to me) unknown.


"The difference between the two units can be summarized in one word: Ventilator.

While the BiPAP S/T can keep the airway open. And it can often push fairly high pressures, there are some major differences.

First, the BiPAP S/T often is not sensitive enough when the breathing is fairly shallow to recognize the change in inspiration to expiration. Thus, the BiPAP S/T won't shift pressures. A ventilator will be able to notice the difference.

Second, the BiPAP S/T is not design to run at the same pressures as a ventilator. It will not fully support breathing. I have a unit that is known as an Adaptive Servo Ventilator (ASV) that is not even a ventilator. If my breathing becomes more compromised (less patient triggered breathing), I will probably need to move to a ventilator as well - for similar reasons.

Some numbers for that ... Both units have the same maximum IPAP (inhalation Positive Airway Pressure) of 30cm H2O. But the Trilogy also recognizes the amount of air that you breathe. It will be certain you get enough intake, not just let the pressure sit there without the actual inspiration.

Third, the Trilogy should be rented on a monthly basis ... to include the cost of a respiratory technician (RT). Dealing with a ventilator to be certain your son continues to breathe will be an ongoing challenge. Having an RT in the picture will help".


My PALS/husband has Medicare as primary insurance and a BlueShield Plan as secondary insurance. BlueShield is a big presence in the Eastern part of the USA; not sure about the prominence in the mid-West or West. We have been very fortunate in that BlueShield has paid every penny for the rental of 2 Trilogies, all supplies and a respiratory therapist that comes once a month. For that we are very, very thankful.
 
Buckhorn, what you pasted is out of date. Today, ST is just one mode that a BiPAP can run. It just means there is a backup rate option. A volume target, which is also an option on certain BiPAPs, is what triggers the "pressure changes" you are talking about. "Ventilator" is a very commonly misused term but to avoid the weeds, it is simply not true that most PALS need one, in the sense you mean, for respiratory support. The Trilogy/Astral class in ALS is about convenience, not advanced respiratory support. Oh, and money.

As to the RT that comes with, many here have experienced the opposite of support -- settings that likely increased discomfort, made it more difficult to use the machine, and/or provided suboptimal respiratory support.

Some RTs are an asset in ALS, but that is not an assumption to make a priori.
 
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