What do I need to know to prepare for the cough assist machine and the trilogy?

[OutlanderALS]

At Clinic today, I was told it is time for the cough assist machine and the trilogy machine. What should I expect and be prepared to do? I guess this is my first "big step" into the abyss and I am overwhelmed. Does anyone know if medicare advantage plans cover this? Will my husband and I be able to handle these two things? Any information will be greatly appreciated! Just as I have "almost" adjusted to the diagnosis October, 2017, now we are at this point. Hard to count my blessings today.

 

[GregK]

The only difficult things about the Trilogy are getting the prescription correct (work with your pulmonologist and respiratory therapist) and getting a comfortable mask.

My personal observations about masks:

Ventilator Masks
There are three general types of masks used with ventilators:
• A full face mask covers from above your nose to under your mouth. This seems to be
the mask most commonly dispensed, but it is both the least comfortable and most
claustrophobic choice. As you can well imagine, both eating and talking are a challenge
with a full face mask.
• The nose mask is a smaller version of the full face. It’s basically a cup that surrounds
your nose. Eating and talking are possible with a nose mask. My personal opinion is
that this is the best starter mask, and possibly the only one you’ll need. The only issue
I’ve had with this style is that it has rubbed against my nose’s septum and caused a
painful sore. Depending on the specific mask, you may be able to wear glasses. I use
this mask occasionally.
• The nose pillow mask is the most compact mask used. As the name implies, two soft
silicon ‘pillows’ snug up to your nostrils. As with the nose mask, this mask allows
eating, speaking and, usually, wearing glasses. This mask can be difficult for a
beginner as the air seems to ‘jet’ into your nose. Another issue is that a poor fit can create painful sores where the pillows touch your nostrils. I use this mask the majority
of the time.
After getting used to either the nose mask or nose pillow mask, I’ve learned that the full face
mask is no longer claustrophobic. I actually have all three styles on hand.
For about a year I lived in mild fear of nose congestion preventing me from using either of
the two nose masks. This fear was unfounded as the air pressure from my vent has proven
adequate to overcome any blockage.​

As to the cough assist, be sure to get the correct mask, it's wholly different from the Trilogy vent masks, and make certain your respiratory therapist adjusts it to your specific needs and shows you how to use it effectively.

 

[KimT]

Also, with the cough assist, have the RT show you how to expand your lungs by putting it in reverse.

Sometimes companies give the cheapest and most uncomfortable masks. You can always upgrade to a better and more comfortable mask.

Regarding Medicare Advantage, I can only speak for the plans in Florida and that was the big problem. They did not cover the full amount of the Trilogy or Cough Assist. Every State is different. I ended up keeping Medicare A & B plus buying D and a Supplemental. I have not paid anything out of pocket for any of my durable medical equipment. In Florida, I would have had to pay 20% with all of the Medicare Advantage Plans I checked. So you'll have to check with your plan. Many of the Advantage plans will have co-pays but out of pocket maximums are in place.

 

[lgelb]

Just want to add mask type #4 to the equation -- a nasal mask without prongs or silicone, that is like a nylon parachute over the nose. For some users, it can be less irritating, and it allows for a lighter hose along the face. This is the Circadiance mask (2 nasal types).

In re Medicare Advantage, yes, plans vary as to DME coverage but also many people are not aware that you can pay cash for accessories such as masks, hoses, connectors, cleaning supplies and often pay less/get more of what you want. DME branches favor companies with which their parent company or affiliate GPO has bundled contracts.

Also, whoever specifies the Trilogy settings is guesstimating off a snapshot. They may not get the settings right to begin with, and almost certainly the settings needed will change as ALS progresses. Every P/CALS has the right to "titrate" the settings on an ongoing basis, which I am always happy to help with.

Best,
Laurie

 

[Atsugi]

My PALS, Krissy, had no problem adjusting to this equipment, but I did. That is, I have a big fear of anything on my face. To overcome that fear, I wore the mask during the day while watching TV and while I was being distracted by other things. As a result, I quickly got used to wearing a mask during sleep.

I'm sure you know the cough assist is uncomfortable to use. It requires a real attitude adjustment so you can relax mentally before the pressure is activated.