Communication key to halting a preventable health crisis

No matter what SMA throws at me, people invest so much into my care that hardly anything keeps me down for long. I invest a lot into my care as well.

Two years ago, I wrote a column about how hard I work with my Vest Airway Clearance System machine to cough up the mucus in my lungs. Coughing is a major challenge for those of us with SMA type I. It’s still hard for me to cough when I use the Vest machine, but it does make it somewhat easier.

The vest is one of my most crucial tools in helping me with stressful burdens. The vibrations it causes while I work hard to cough have no doubt prevented countless respiratory infections.

When I do have a respiratory infection, the vest literally lifts heavy burdens from me. The extra mucus in my lungs makes me feel like there’s an invisible heavy hand pressing down. That feeling prevents my lungs and diaphragm from expanding enough. The more mucus the vibrations of the vest help me cough up, the lighter that invisible hand feels and the easier I can breathe.

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It’s my job to tell my mom, nurses when something seems off

As miraculous as this sort of medical technology is, what’s equally helpful is communication. As soon as I feel like I’m getting sick, it’s my job to tell my mom and my nurses immediately so that appropriate steps can be taken. I listed these steps in the first column I wrote four years ago.

Unfortunately, I wasn’t so quick to fully communicate that my Vest machine didn’t feel quite right recently. This was a critical error on my part.

I’m not trying to scare anyone away from using the Vest machine with the following story. I’m just trying to show how communication and simple precautions can prevent a serious situation.

Some people don’t need to go on a ventilator when vibrating with the Vest machine, but I do. For years, my ventilator and vest have worked well together two to three times a day.

As many as seven times over the past few months, I noticed that the ventilator started giving me shallow breaths while I was vibrating with the vest. This was definitely new, and I should’ve spoken up about it. Unfortunately, I didn’t, and it cost me dearly.

A few weeks ago, while the vest was vibrating me, the ventilator started giving me shallow breaths again. This time I passed out. My mom called 911. Both she and my nurse fought with all their hearts, acting as a lighthouse to bring me back to safe harbor. Paramedics then arrived at my house and transferred me to the hospital.

My heart was always beating, but I was unresponsive for at least 30 minutes. Plus, I didn’t know what was going on around me for two days.

Blessings from a storm

Despite the terrifying situation, some blessings did come out of it. One was that tests showed that no brain or heart damage resulted from what I went through.

Another is that my recent crisis reminded me how much people care for me, as well as how much I enjoy life. For the six days I was in the hospital, my mom showed me a lot of love and commitment by staying with me.

Ari, center, smiles as he prepares to go home from the hospital. He’s flanked by his home healthcare nurse, Billy Koehler, left, and his mom. Ari’s mom and Koehler recently helped save Ari’s life. (Courtesy of Ari Anderson)

When she couldn’t be there, my nurses from home stayed in the hospital room with me. Having my mom and those nurses there helped meet all my needs, especially since the hospital nurses could check on me only every couple of hours.

While I was in the hospital, I started thinking about what caused my crisis. I had an idea that two settings for the Vest machine — the pressure and the frequency of vibrations — needed to be lowered a little.

The doctor agreed with my idea. The new Vest machine settings have done a fabulous job, preventing shallow breaths when working with my ventilator

On July 1, I went home from the hospital with new reasons to smile. I now fully realize just how much I want to spend my life with the people I love and care about. I’m so thankful that God brought me everyone in my life.

It would’ve been a tragedy to have passed away and been separated from my loved ones simply because I didn’t communicate changes in how my breathing felt. This has been a life lesson to always be on guard to avert crises that are preventable, and never become complacent.

Communication is key to keeping us all soaring!

Note: SMA 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.