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.
Then I started to get sick, a regular occurrence for someone who spends the day with a preschooler, and at first nothing more than an annoyance. But I couldn’t cough, and all the Mucinex in the world wasn’t going to help me clear my soupy lungs. About a week after my symptoms began, I ended up in the ER with pneumonia, and a tube down my throat.
It had been exactly a month since I’d ordered the cough machine and Bipap, but we’d received nothing, and nothing was on the way. My stay at the ICU finally kicked things into a higher gear. There I used the hospital’s cough assist multiple times a day, marveling at how much it would have helped me if I’d had it earlier. We were even able to borrow one to bring home until my own device arrived, which it finally did two days after my release from the hospital.
On that day, two reps from a company called Apria came to set up both the cough assist and the Trilogy. I was supposed to try sleeping with the Trilogy, to give my muscles a break at night and potentially boost my energy during the day. The reps set up the cough assist to mirror the settings on the one I had borrowed. And then they spent nearly an hour fiddling with the Trilogy, unable to settle on the correct coordinates to help me breathe more comfortably.
They mainly seemed confused about how to set up the device for a person who could still initiate and draw a breath on her own, but was just looking for a deeper push and pull. Eventually, they seemed satisfied, and although I was feeling claustrophobic, with a mask covering my nose and air not as easy to push out as I would have liked, I decided I had had enough of the exercise.
They left, and when Rob got home, he had to reset the cough assist, which had been calibrated incorrectly. We’re lucky he knew how to do that.
Yesterday, almost 2 months after I first ordered it, I felt the urge to use the Bipap. Rob plugged it in and hooked the mask around my nose. Air blew haphazardly, choking me until I ripped the mask off, hands still strong enough in a pinch.
We called the doctor, the respiratory therapist, Apria. They all expressed surprise at the situation, and confidence in each other. But from where I sit, Monday morning, with a breathing device that still doesn’t work, I’m not feeling much confidence in anyone.
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I had that urge to rip mask off my face until I started taking mmj before putting it on.
No problems after and helps a lot with daytime energy. I use bipap about 7hr each night.
My boyfriend had a hard time adjusting to the nose mask . Switched to one that covers his nose and mouth and it works much better. He uses it 20 hours a day…doesn’t want a trach.
I truly hope they aren’t asking you to tough this out, or figure out how to make it work on your own. Grrr.
So sorry you’re going through all this. Sending hugs from IL
So sorry to hear your story. My most recent clinic visit I went from 64 to 44 fvc. Got a trilogy and feeding tube since then. Been able to use the trilogy at night but have to have care aid in room at night as I can’t take it off at night with my hand weakness. Apria rep didn’t understand my concern about that nor did the surgeon’s assistant when they said it would be easy to use the feeding tube myself. Still waiting on my cough assist. The joys of ALS. m The good thing is a friend from the support group meetings made me a cart with wheels to put all of the equipment on so it is easier to move from one room to another. Best part of this illness is meeting such amazing people.
Rick, that is so frustrating! Hard to deal with people who can’t understand what ALS does. But you’re right about the amazing people!! Thanks for sharing this.
K. Groll
I read your comment and was wondering what mmj is. I’m not able to sleep with the Bipap and my breathing numbers are declining so I really need to use the machine more often.
heartbreaking and brave. please remind us of the fundraising site.,..you’ve inspired me to join it.
Sarah – have you been taught breath stacking? It’s great to use an ambubag with it which is kind of like 2 birds, 1 stone.
In addition- did anyone discuss a daily pulmonary routine with you? Many pALS have told me that using the cough assist daily – even if you don’t feel like you need it? You can always add in more times when you do but daily use allows for you to be sure to have cleared as much as possible – lowering the odds of bacteria growing in anything left “uncleared”.
I have learned breath stacking, but I admit to being bad at practicing. Your comment encourages me to try harder. And I use cough assist multiple times daily, because I still need it, will plan to keep that up, as well. Thanks, Liz!
Great, we would love to have you on the team, Lauren!! Join us at https://www.razoo.com/team/Whatwouldyougive
Or donate at https://www.razoo.com/story/Sarah-Coglianese-Fundraising-For-Whatwouldyougive
Thank you!!
Medical marijuana. It also knocks out the spasticity in my legs.
I am sorry you had to experience that. It’s very frightening. I had the same experience with my insurance. I had to wait a month before I got my cough assist, and my daughter, bless her heart, was in the phone constantly. You would think that with this type of illness something would be done STAT. Disgusting…well, welcome to politics and paperwork. One thing I found that helps me as well is to turn my head upside down, if you can, like between your legs. It prevents the mucous from clogging your windpipe, and I can get it out a bit better. Take care. Remember, we are all in this together…much love, deb
http://debsboardinghouseandcafe.com/?p=278
This are my thoughts on it.. HMO..? Ha.
Thanks. I live in MD so we need to look into the availability.
I really appreciate your quick response. I have no support group and mostly we’re just floundering.
I’m so sorry for your frustrating experience SC. I hope that they can calibrate the device correctly for you to use. There seems to be a lot good advice above.
Always thinking of you my dear friend. xoxo
I am 65, was diagnosed at 64, Slowly degenerating. I’m on the Deanna Protocol which I think is slowing my symptoms. Recently got a feeding tube, I can still swallow with difficulty. Mine was inherited from family. My mother, grandmother, sister, aunt, just to name a few, all had it and passed away from it.
I enjoy reading all your stories.