This Is ‘Soaring With Hope’ — Welcome Aboard!

Doesn’t it feel like we all carry a lot of baggage in life? If we could just forget about all the negatives, we could live on cloud nine.

What if I told you that we would be permanently stuck on ground level, going nowhere in life, without all the heavy baggage of our experiences? This is what living with SMA type 1 for 38 years has taught me.

I am honored to be able to open up some of my baggage and share my experiences with you. No worries, I won’t get too personal and give you “TMI” (too much information).

As captain of this flight, it is up to me to be honest about my journey. The good news is that in 34 of the 38 years, I have only been admitted to the hospital twice! The bad news is that this doesn’t mean that I don’t get plenty of respiratory infections. How is this possible? The answer will start you off the launch pad of getting to know me.

Sadly, in the current pandemic, the general public is learning how terrifying it is to go on a ventilator because they can’t breathe. Hopefully, for the people that survive, this brings them a new positive outlook on life. That happens to me every time I get sick.

Yes, it’s true that I’ve used a tracheostomy and a ventilator every day since I was 2. Yet, when I’m healthy, I spend most of the time off the vent, except for breathing treatments and when I’m sleeping. My health is so stable at times that I was able to attend all college classes in person, come rain, snow, or shine, with my tracheostomy, wheelchair, and all. In 2005, I happily graduated from Queens University of Charlotte in North Carolina, with a bachelor’s degree in science.

The flip side to all this is that when I get sick, I get sick. I can go from being able to breathe on my own for 12 to 14 hours to literally being unable to come off the vent for five minutes without turning blue. This transition can amazingly happen in less than a day.

Although I use medical technology daily, I truly know how necessary, yet frightening, it is for COVID-19 patients to have to go on life-support.

As soon as I know I’m getting ill, which happens one to six times a year, my revolutionary sick protocol immediately goes into effect. Following are a couple, but not all, of the steps I take to prevent being shot down:

1. As soon as I tell my home-care nurses that I have a sore throat, they start flying faster than the speed of sound. Instead of me going out in the cold to the doctor’s office, a trach culture is taken in my home. My mom, who is a nurse, takes the culture to the lab at the hospital to see what bacteria is growing.
2. When trying to break the sound barrier, there is no time to wait several days to see what the culture is growing. My nurses have standing orders from my physician to start me on antibiotics immediately after the trach culture is taken. When the culture results come back, my doctor adjusts the orders if needed.

(Note: Just because I’m able to take care of most of my illnesses at home doesn’t mean that you should never go to the hospital. If you’re sick enough to need to be admitted, then you certainly should go.)

How were my proactive measures developed? One word: baggage.

My baggage, or past experiences, tell me that how quickly my mom, my nurses, and I react determines a lot. Fast action can determine if I feel better within five hours after starting antibiotics, as happened two weeks ago. A slow response can mean that I might have to be admitted to the hospital for 13 months straight, as happened when I was a child. Baggage saves my life, and it can save yours.

It wasn’t anyone’s fault that I was in the hospital for 13 months when I was younger. My mom and nurses were still learning the best ways to take care of me. In short, learning is a painful process.

I would like to use this column as a way to share our baggage and burdens — as much or as little as you want. What special techniques have you developed? What have you learned works for you? Please let me know in the comments below.

By soaring together, there is no level of hope that we can’t reach. I look forward to hearing from you during our journey together.

***

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.