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ALS RESPIRATORY GUIDE

Bilevel (BiPAP) Sleep Therapy


A bilevel machine, commonly referred to as a BiPAP, is a breathing machine primarily used during sleep that delivers pressurized air through a mask or interface to assist you with both inhaling and exhaling.

​A bilevel (BiPAP) can help you sleep better, wake up feeling more rested, and have more energy during the day. In addition to improving your quality of life, research has shown that using a bilevel early and regularly can help you live longer.



How do bilevel machines work?

When the diaphragm muscles weaken and your body is unable to fully inhale oxygen and fully exhale carbon dioxide, your mind can begin to feel foggy and you can get morning headaches. The bilevel machine assists you in being able to take a bigger breath and exhale more fully.

The bilevel is noninvasive, which means you can take it on and off and use it whenever you wish. You will not become dependent on it, but you will probably want to use it because you may feel better when you do. Bilevel machines do not have internal batteries, so they must be plugged in.
Your neurologist will prescribe the right pressure settings for you, and a respiratory therapist from a durable medical equipment (DME) company will visit to set up the machine and train you and your caregiver(s) how to use it. The respiratory therapist will try to find a face mask or interface that lets you sleep in your normal position, whether on your stomach, back, or side.
​

The respiratory therapist will also show you and your caregiver how to use and refill the humidifier chamber, which humidifies the air to help prevent dryness in your mouth, nose, throat, and airway.



Can I use it during the day?

Yes. If you are having difficulty breathing during the day, or simply feel like you could use a little more breathing support, you can use your bilevel while you are awake with the same mask or interface you use when you sleep. This can give your diaphragm a break and increase your energy level. You can also use your bilevel during naps, just as you do when sleeping at night.

If you are finding that you need your bilevel more throughout the day, speak with your clinic team about options that might work better for you.



When should I get bilevel?

Your ALS clinic team or neurologist should monitor your breathing every visit and let you know when you will qualify for and can benefit from a bilevel. Ideally, you will get a bilevel before you experience breathing difficulties so you can have time to get used to it.

How can I get one?

Your neurologist must submit your pulmonary function test results and documentation that demonstrate you need breathing support during sleep. The durable medical equipment company will process the order through your insurance, deliver the bilevel to you, and train you how to use it. Insurance companies do not usually require ALS patients to do a sleep study to qualify for a bilevel.




Using a Portable Ventilator in Bilevel Mode


Using a portable ventilator in bilevel mode provides the same therapy as a bilevel machine. Portable ventilators have more settings and uses, but they are more expensive. Your medical team will recommend the device they think is best for you based on your breathing measurements and symptom progression.

​How much will I have to pay?

Bilevels are considered rentals for the first 13 months and are covered through Medicare, Medicaid, and most private insurance plans. After 13 months, the machine becomes yours and your supplies will continue to be covered by insurance.

Medicare will cover 80% of the cost of your monthly rental. Medicaid, supplemental plans, and secondary private insurance should pay for the remaining 20%. If you have Medicare but do not have Medicaid, a supplemental plan, or secondary private insurance, you will likely have to pay the remaining 20% out of your own pocket.

If you do not qualify for Medicare—but have Medicaid and/or private insurance—find out what your durable medical equipment (DME) benefits will cover. If you have a Medicare Advantage Plan, be sure to ask about your DME benefits.

If you are facing out-of-pocket expenses that you cannot afford, talk with your DME provider and/or local ALS organization about financial assistance options. Respiratory equipment is not generally available from loan closets, but you can always ask.

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When your bilevel machine is delivered, a respiratory therapist will bring a variety of mask options and recommend the one that will be the most appropriate for you. This may depend on how you breathe at night and how well the different masks fit.

What if I’m having trouble using my bilevel?

Some adjustments may be needed when you first start using a bilevel. If you are having trouble, schedule another visit with your respiratory therapist. Together, you should be able to resolve the issue. The pressure may need to be adjusted, your mask may be leaking, or you might simply need more time to get used to it. Whatever the problem, the benefits you’ll receive from your bilevel are too great to give up and stop using it.




ALS RESPIRATORY GUIDE


Respiratory Symptoms
​Respiratory Support
Monitoring Breathing
Introduction to Devices
Masks and Interfaces​
Bilevel Sleep Therapy
Noninvasive Ventilation
Cough Assist Machine
Suction Machine
Invasive Ventilation

Advance Directives
Traveling with Devices


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