Tag Archives: trilogy

Saving Face

I’m having a hate–hate relationship with my Trilogy, which is the BiPAP machine I use to breathe at night. Except, do I actually use it to breathe at night? The fact that I’m unclear about this is the biggest part of the problem.

Back in June, I was in the ER and then the ICU for a case of pneumonia. I had already been told that my breathing levels were on the decline, and the illness didn’t help. I left the hospital with both a cough assist and the Trilogy, and I was told to use the latter every night.

Friends with ALS told me to try the nasal pillow mask, because it was the smallest and most manageable. Little plastic “pillows” fit into your nose and a single strap wraps around your head. Air blows directly into your nostrils all night. But it didn’t work for me, at least not at first, because my mouth kept popping open, shifting the air around and waking me up. So I opted for a full face mask, not unlike an imprisoned serial killer who eats his victims. That’s right, I said his. It was not a good look for me. Read More>

|Categories: Doctors, Life, Vanity | Tags: , , | Permalink

Just Breathe

I went to my ALS clinic on May 11. My breathing numbers are getting low, but my doctor told me to ignore them. “They don’t mean as much as you think they do,” he said.

“Then why do you tell me what they are?” I asked.

That day, we ordered a cough assist (because coughing and blowing my nose are hard for me), and a Bipap machine—the Trilogy 100—because I didn’t want to find myself in a position where breathing was difficult and I wasn’t prepared.

Three days later, I was back at the clinic. I’d been reading to Scarlett that morning when I felt difficulty drawing in a full breath. I knew that I was not going to suddenly drop to the floor, unconscious, but I was uncomfortable. At the clinic, the doctor told me that what I was experiencing was 20% a breathing problem and 80% a panic problem.

“You’ve probably been thinking a lot about your numbers,” he said.

I had. When you find out that your breathing muscles are weakening, it’s really very different than dealing with weakened arm muscles. Both suck, obviously, but only one makes you feel like you’re in a dangerous situation.

“You’re not in a dangerous situation,” my doctor said, and I could tell that he was right—for the moment. I had gotten nervous, the recent clinic news a loop in my brain, a reminder that I have a disease that only gets worse. But I was safe, and my assistive breathing devices were on the way, supposedly being rushed. Read More>

|Categories: Doctors, Progression, Therapy | Tags: , , | Permalink