Breathing Easier With Support

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by Kristin Neva |

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Figuring out how to manage each stage of ALS for my husband, Todd, is a challenge. Each time Todd experiences another loss, I scramble to find answers and resources. Our latest challenge was trying to get proper support for Todd’s Astral noninvasive ventilator.

It doesn’t help that we live in rural northern Michigan, where the nearest ALS clinic is four hours away and across state lines. The closest pulmonologist is two hours away. We made the trek to see him once when Todd received a donated BiPAP machine. The pulmonologist counted Todd’s respiration and prescribed settings. Todd never felt comfortable using the machine at the set intervals, and it was too difficult for Todd to travel back to see the doctor again.

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I knew from ALS social media sites that many people with ALS use either an Astral or a Trilogy. These are smart noninvasive ventilators that give the peak pressure only when the patient demands it. I asked the respiratory therapist (RT) at the local hospital where Todd gets his breathing tests about it. He told me the best way to get support in our small town was through a durable medical equipment (DME) provider.

When a person with ALS qualifies for breathing support, a doctor can prescribe a device. Medicare reimburses the DME supplier for their portion of the monthly rental fee, which includes the machine, in-home setup, accessories such as masks and filters, and maintenance. They would send an RT to the home to adjust settings and show us how to use it.

About a year ago, I called a DME provider and chatted with an RT about where Todd was at and how he would qualify for Medicare’s reimbursement of a device. In December, Todd had his breathing tested, and he was well within the Medicare guidelines. We sent the results to his primary care physician and requested that she prescribe ResMed’s Astral noninvasive ventilator from that same DME provider.

Within a couple weeks, the supplier delivered the equipment to our home. The RT I had spoken with no longer worked there, and I was surprised to learn that the cheerful woman setting up the equipment was a licensed practical nurse (LPN) — not a respiratory therapist. They no longer had an RT on staff. She programmed the Astral with settings for the peak inspiratory pressure (PIP) and the positive end expiratory pressure (PEEP) recommended to her by an RT who worked with ALS patients.

Todd tried to use it, but he felt like he wasn’t getting enough air when the humidifier was hooked up. As difficult as it was for him to breathe on his own, he didn’t want to wear it. I wondered if he needed different settings when using the humidifier. I shared our situation on an ALS Facebook group and people weighed in with ideas based on their experiences.

I called the LPN and we discussed Todd’s experience. She was eager to help, and she said she’d contact ResMed and get back to me. When I didn’t hear back from her, I decided to call ResMed the next morning. The woman who answered the phone said they couldn’t help me directly, and that she could only refer me to my DME provider. I explained my frustration. I wanted to deal directly with someone who had more knowledge and experience.

The ResMed employee referred me to another vendor in our area, so I called and inquired as to whether or not they had a respiratory therapist on staff.

“We have two,” the woman replied.

I talked to one of them, and he answered my questions. I had a sense that he had the experience and knowledge we needed.

We asked Todd’s physician to send the order to the other DME supplier, and we switched companies. Within a week, an identical machine was delivered, and the RT spent a couple hours with Todd fiddling with the settings. In addition to the PIP and the PEEP, there are trigger points and ramp-ups that needed to be adjusted based on how it felt for Todd. The Astral is a complex machine, and it requires specialized knowledge.

Todd liked using the machine during the day, but it disrupted his sleep at night. The next week, the RT returned and set up a nighttime program for Todd with different settings.

Todd now uses the machine all night and much of the day, except when he eats and toilets. He’s getting better sleep, so he is more rested during the day. He gets up earlier, and he doesn’t need naps. He is overall happier.

I felt a sense of victory when I managed to navigate our healthcare system to get Todd the care he needs. We are both breathing easier now.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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