Buy All the Hand Sanitizer If You Must, But Don't Forget to LIVE!: My thoughts on coronavirus and Cystic Fibrosis

On March 4, 2020, I celebrated my 42^nd birthday. That day also seemed to mark the height of the fear of the coronavirus in the U.S. to that point. The news headlines included stories about the shortage of hand sanitizer and medical grade masks. My husband, Steve, who runs a porta potty business (insert laughter here), is required by state regulation to provide hand sanitizer in his units. As I reflected on growing another year older yesterday, I also had multiple discussions with him on where to find large quantities of hand sanitizer. Everywhere is sold out. Steve remarked, “maybe we’ll just make our own!”

The sudden vigilance that has gripped our country is not new to me. I have been vigilant since December 4, 2003 when I learned that my first born, 4-month-old son, Alex, has Cystic Fibrosis. What is Cystic Fibrosis? Cystic Fibrosis or CF is a life-shortening, genetic illness that affects, primarily, the lungs, pancreas, and sweat glands. That’s the short definition. The long definition involves learning a bit more about Alex and our lives.

Alex is now 16 years old and a junior in high school. He’s a super smart, caring kid who excels in academics and watches YouTube channels on world history in his spare time. He sings in choir, plays saxophone in band, performs in musicals, plays soccer, and runs track. He loves to play his Nintendo Switch too. He’s a regular teenager, a pretty cool one if I do say so myself, and by looking at him, one would never know that he works hard every day to keep himself healthy.

When Alex wakes up in the morning, the first thing he does, is strap on his Vest. The Vest is just what it sounds like—a vest that you wear around your chest. This vest is special because it is connected to an air compressor that, when turned on, vibrates Alex’s chest walls to help clear his lungs of the thick, sticky mucus his body makes. (It’s this thick, sticky mucus that causes most of the problems in a CF body.) While his chest is vibrating with the Vest, he also connects a nebulizer cup, flips the nebulizer switch to “on” and breathes the mist of his medications. First, albuterol, and second hypertonic saline. These medicines help to open his airways and clear out the mucus. The treatments last for about 30 minutes, and he does the computer to pass the time.

Next up, breakfast. Every time Alex eats, he must take pancreatic enzyme replacements or “enzymes” as we call them in the CF community. He does this because the ducts of his pancreas are blocked with mucus, and the digestive enzymes that need to pass through to his digestive tract cannot get out. The enzymes he takes help him digest food and absorb nutrients in a more normal way. If he did not take these enzymes, he wouldn’t get the nutrients from food that his body needs to grow. That’s how we knew he was not well when he was 4 months old. He had fallen off the growth charts and weighed just 8 pounds 12 ounces at 4 months old. He was a pale, sickly, little baby boy who nursed all the time. My poor child was essentially starving.

In addition to enzymes, Alex also takes a variety of other medications and vitamins to help his body work and grow more normally. A total of 30 pills a day, if we’re counting. The coolest of these medications is one called TRIKAFTA, which was approved by the FDA late in 2019. TRIKAFTA is the third wave of a category of medications that have been created specifically for Cystic Fibrosis to fix the problem at the cellular level. TRIKAFTA has been shown to work even better than its forerunner ORKAMBI, which Alex also took. When it comes to genetics, things get tricky. Alex happens to have two copies of the most common CF mutation, called Delta F508, and because of this, TRIKAFTA works for him. Not every person with CF can be helped by this medication, however. The Cystic Fibrosis Foundation is collaborating with drug companies and scientists, and together they are still searching for medications to help the remaining 10% of people with CF who have what are called “nonsense” mutations. In addition, they continue to search for a cure.

After his morning routine, Alex heads off to school like other kids, and because of all his activities, we often don’t see him again until 8:00 or 9:00 o’clock at night. At this point in his life, he can self-administer medication at school—enzymes and inhalers as needed. This was not always the case. He used to have to go to the office for his lunchtime enzymes, and when you’re a rule-following, routine oriented elementary school kid, this can be tricky to figure out. But that’s a discussion for another day.

Once Alex is home and before he heads off to bed, he does another 30-minute round of breathing treatments –the vibrating Vest, and two more nebulizer medications. As parents, Steve and I feel so lucky to have such a responsible kid who has learned to manage this daily routine all on his own. That was the goal from the very beginning. However, there were moments when I doubted that we would ever make it to this point. Moments when, at 3 years old, Alex refused to take his enzymes--when I had to decide whether to force feed him the medicine or let him starve until he decided to take it himself. Painful moments and moments when I cried. Moments when I envisioned my son’s death and what that might look like. Moments when I resented having to wash and disinfect so many nebulizer cups for the rest of my son’s life. Moments when I came home exhausted and strapped the Vest on my sleeping boy and held the Bubbles the Fish nebulizer mask to his face hoping that he was breathing in at least some of the medication. So many moments…

Moments of vigilance. Being vigilant is necessary when you are caring for a child with Cystic Fibrosis. Alex was diagnosed right before Christmas 2003, and for his first Christmas I bought everyone in our families bottles of scented hand sanitizer and explained how important it is to keep your hands clean in order to prevent the spread of germs and viruses that could make Alex sick. Since CF is a respiratory illness, even the common cold can have a worse effect on him. CF is a progressive disease, and often CF lungs worsen slowly over time, which is why the daily treatment regimen is necessary. It is crucial preventative care. However, sometimes CF lungs worsen suddenly. For example, when sickness sets in, the lungs get bogged down with the thick, sticky CF mucus. When this happens, certain bacteria can infect CF lungs and damage the tissue. Once lung tissue is damaged, it does not function. The more damage, the harder it is to breathe.

We don’t normally think about our ability to breathe until suddenly we can’t, which usually happens when we get sick. Alex thinks about his ability to breathe every single day. He completes his treatments daily and without question. He faces the challenges of living life with CF with courage, resilience and a sense of responsibility beyond his years. In the CF community, we all know that vigilance is necessary, but it’s not fool proof. I can worry and strive and fear, but I can only control so much. Our time here on this earth is short. Perhaps that truth—that consciousness of living—of what it means to live—is the most important lesson I’ve learned on our journey with Cystic Fibrosis. It’s a consciousness that informs how I choose to live my life. A consciousness that has shown me to find hope, joy, beauty even in the toughest moments. A consciousness that motivates us to face each challenge and keep going.

While our country panics and bottles of hand sanitizer fly off the shelves, I am finding myself strangely calm. To me, coronavirus or COVID-19 is just another virus, another threat to my son’s health. In the end, COVID-19 will come, no matter how much hand sanitizer we’ve used. The lesson in all this panic is this: take care of yourselves and your families. When you’re sick, stay home! Tend to your needs. By doing so, you not only care for yourself, but you care for others—especially for those who are most vulnerable. 

Buy all the hand sanitizer if you must, but please, do not lose yourselves in fear and forget to LIVE!