I am a cystic fibrosis mama. I am well-trained in being able to differentiate Drew's coughs, and have the superhuman ability to hear a cough over a mile away. After having a child with CF, protective motherly instincts I never knew existed took over, and I learned how to live in a world full of germs and bacteria that are designed to hurt my child.
Every cold and flu season, I have become accustomed to living with a constant lump in my throat every time my son goes to a friend's house, goes to school, or participates in an activity. I've seen him at his best and worst with this disease. His still-visible PICC (peripherally inserted central catheter) line scars support every decision I make for him whether it's keeping him home from school when the flu hits his class or canceling a playdate because of another child's runny nose or cough.
The COVID-19 pandemic has been the worst nightmare of every person with CF and parent of a child with CF.
As the country shut down, my anxiety level went into overdrive. I felt like I had a newborn with CF again. How would he handle COVID-19 if he got it? How are we supposed to live in a world that isn't designed to protect the most vulnerable? How would this impact my child without CF if we had to stay in lock-down longer for the sake of her brother's health?
I was eager for weeks to pass so we could learn more about how COVID-19 was impacting the different populations around the world, but especially the CF population.
As social media and well-respected medical professionals and health organizations bombarded us with a plethora of varying opinions and information, I found myself wanting to seek out others' thoughts and opinions on these topics. I quickly learned that was an unwise decision for me. A month into the pandemic, I made a decision to only follow the medical advice and information from my child's CF care team, as well as medical professionals on CF Foundation-hosted webinars.
Turns out, the information I learned from my son's care team and the other medical professionals was accurate every step of the way. From how the virus acted within the body to the antiviral medication Remdesivir, the information was truthful, well thought out, and gave me the peace I needed.
The sessions at this year's North American Cystic Fibrosis Conference on COVID-19 were up-to-date, well-done, data-driven pieces. There were no political undertones or rhetoric within the data and that suits me just fine. Politics has no place in medicine. I'm only interested in hearing from medical professionals who have the expertise and confidence when it comes to treating this virus. That's exactly what I found during those sessions, and I appreciate every person who spoke on this topic.
Medical professionals from the U.S. and other countries gave an excellent, comprehensive overview of populations most affected by the virus, including the percentage of complications that arose within those populations, and a detailed understanding of the incubation period of COVID-19 once it enters the body. I appreciated learning specific complications that arose in people without CF, including detailed laboratory abnormalities and X-ray findings. These discoveries helped me educate my relatives who do not have CF but are also at risk.
Children always seem more susceptible to every virus, so learning the majority who got COVID-19 experienced milder symptoms than adults was eye-opening. I appreciated the citations from pediatric medical journals so if I wanted to read more, I could find them easily. The most fascinating data I learned involved the results of how COVID-19 affected people with CF. Up-to-date, worldwide data was provided along with age demographics, complications, and the percentage of people on CF modulators.
There were several conclusions made as to the possibility of why people with CF are faring well with this virus. The CF population and their families are well-trained in social distancing and hand hygiene. There are also findings that specific proteins within the body and medications like azythromycin can reduce viral entry. This is information I plan to follow up on with my son's CF care team so I can continue educating myself about this virus and how it differs from other viruses.
With this knowledge, I have been able to make the best decisions for my son and our entire family when it came to how we would re-enter society and learn to live with COVID-19 among us. This came with some challenges as it's hard to navigate a world where so many people don't abide by the same precautions or share the same opinions.
Everyone interprets and processes information differently and medical information is no exception, especially because most people have never had to think about a virus the way a person with CF and their family think about viruses. I overhear people talk and read social media posts that aren't even close to being medically correct and I just keep scrolling.
Between COVID-19 and the presidential election, I've been content staying off most social media. We continue to do our best, and my children are happily adjusting to this new way of living for the time being. I am grateful the CF Foundation shares the knowledge from experts from around the world, which allows us to receive accurate information, so we can continue making smart decisions for our families.
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