The Device You Love to Hate

Dear Andrea,
My doctor told me I need to use the CoughAssist.  I HATE it.  I heard you love it, and I cannot figure that out!  What can I do to make myself like it, and why do you feel the way you do about it? 

Sincerely, 
CoughAssist Hater

Dear "Hater,"
You are not alone.  Many people cannot stand the CoughAssist, and I feel like it's a "missed opportunity" so to speak in our community of NMDers.  I also believe the lack of use of this device is often at least part of the path to worsening respiratory health.  Having said all of that, I credit the CoughAssist T70 with saving my life.  You read that correctly; I know that not only has this device kept me out of the hospital during what were some of the worst respiratory infections of my life, but CoughAssist saved my life one morning.  

It was October of 2016, and I knew I was not well. I didn't have much more than a mild cough at that point though, and I was using an OTC mucus thinner with expectorant. I awoke during the wee morning hours, threw off my noninvasive ventilation mask, turned off my Trilogy ventilator, and raced down the hall to the CoughAssist on an adjacent bathroom's counter.  I was mid "coughing fit," and I felt as though I was slowly choking for air.  

My husband wasn't far behind me.  I used CoughAssist as I always had, but I could tell that mucus was stuck at the back of my throat and would not dislodge.  I was starting to run out of air.  My lips were beginning to get a slight blue twinge.  My fingers shook as I changed the values of the insufflation and exsufflation pressures, and my face was as white as a blank sheet of paper.  After a couple of repetitions at the even higher pressures, up the mucus came! It was larger than anything I had ever coughed up, so much so I gagged and quickly "lost my cookies," if you know what I mean.  

My husband and I both looked at each other like, "What on earth is that!?" as it sat in the sink basin, too large to be easily rinsed down the drain.  It literally looked like a small fetus or some sort of alien (maybe that description is TMI), but after consulting my pulmonologist, I learned I had removed a small mucus plug!  

What would I have done if I had not had my CoughAssist to clear my airway of this blocking mucus?!  I really don't want to consider that, because I think calling 911 would have been our only option. I don't know that ambulances come equipped with airway suction.  And I highly doubt EMTs know what a CoughAssist is or that those of us living with neuromuscular disease use them.  

My October 2016 mucus plug experience is just one of many examples of how this important piece of respiratory equipment became a life-saver for me.  So, after all of those words, I'm answering your question as to how I could love it so much with the fact that I'm still here to answer your question...because of the CoughAssist.

In addition to the life-saving, hospitalization preventing aspect of this device, I came to realize more than a year into my daily use of it, that it had another amazing benefit:  it stretched my chest wall muscles and allowed me to take deeper breaths while off my assisted ventilation used during sleep.  I don't know about you, but anything that helps me take deeper breaths and feel less like I need help breathing is a winner.  

As for how you can grow to like it more, the only way is to jump on in!  "The water is fine," as they say.  You must prioritize it like a daily habit as important as brushing your teeth.  Come up with a reward for yourself that you earn after using it X number of times per day (maybe a favorite desert or candy).  After you've done this for a week, reward yourself again (maybe a new album download or video game). Make it a full month of daily use of CoughAssist?  Reward yourself again! 

Another way you can make it become a tolerable new habit is to devote a cart or special space to it.  In 2017, I devoted a special space to all of my "ancillary" respiratory equipment like the CoughAssist, suction machine, nebulizer, and all of the supplies.  I called it my "respiratory desk" and recently upgraded that to a wall-mounted desk and two separate drawer units that better organize it all.  I followed a decorative theme to match the room my respiratory desk is located in. It includes special sea shells and decor that reminds me of enjoyable trips to the beach.  Whatever it takes to motivate yourself to use the CoughAssist, I urge you to consider doing it!

It didn't happen overnight, but through daily use of the CoughAssist for a little more than a year, I saw an improvement in my forced vital capacity (FVC), the measure of the strongest amount of air you can forcefully exhale from your lungs after inhaling your largest breath.  I and my then pulmonologist attributed that gain to my CoughAssist usage.  It and my nightly noninvasive ventilation was loosening up my tightened chest wall muscles, and making my lungs less stiff and able to hold a larger amount of air.  

We know from experts in the NMD field that over time, our respiratory (breathing) muscles in our abdomen and between our ribs can become contracted and stiffen just like those at the bend of our elbow, knee, etc.  Stretching these out is necessary for maintaining and/or stabilizing our respiratory health. The CoughAssist is our opportunity to implement this as a form of breathing muscle exercise into our NMD care.

​If you would like to learn more about my love of CoughAssist, just reach out to me at Info@BreathewithMD.org and ask for a link to my February 2020 CoughAssist webinar.  I promise I'm not a sales person for the CoughAssist, but I can definitely "sell you" on why you need to be using one every single day.  
​
Wishing you Happy "Cough Assistance,"
Andrea

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