A couple of months ago ushered in the symbolic beginning of fall in our house. The transition from health to sickness is sudden and relentless. It was a beautiful day and everything seemed so right in my world. I was in the kitchen when I heard a muffled sound from the bedroom, a cough. My heart stopped. My mind immediately rolls through the countless possibilities. Second and third coughs ensue and the conclusion is clear—the dreaded cold going around school unfairly settled in my little one. I watch her closely, my ears unable to hear conversations around me, my only focus is now that small noise that so many don’t even hear. Within moments I could deduce that it was the start of countless worry filled nights.
Cystic fibrosis (CF) is a sneaky savage, robbing years and stealing dreams. An individual with CF can harbor a single bacterium for months or even years without a pulmonary exacerbation, controlling it with respiratory therapy and intermittent antibiotics. Then, like a thief in the night, a simple respiratory virus is introduced, and a war begins. The body is a humbling machine but it can only do so much. The multisyllabic devil that has taken residence in the body is like a guest that has overstayed his or her welcome. The body becomes used to it and turns its back to fight the new invader. Herein lies the problem, as the real enemy has just been left unattended to wreak complete havoc on my daughter’s body. So, while a cold is unfortunate for all children, to my daughter it is the beginning of hours of treatments, an array of antibiotics that threaten her body in countless ways, and the unnerving reality of the control CF has over our lives and our future.
The options are limited. She is unable to fight cystic fibrosis and a common cold at the same time without ammunition of some sort. Phone calls are made; emails flood her practitioner’s inbox. There is a window of time when you can fight the infection with the hope of maintaining lung function; however, there is always the possibility of permanent, unforgiving damage. I cannot live with that. So, the week of hell begins. Every treatment that seems to steal our day is doubled and even tripled when her body demands it to be. The hope to avoid a hospital stay gives power to charge through sleepless nights and coughing fits that seem impossible to live through. Then the questions begin to surface about whether our efforts are enough. And then just like the thief came into the night, he leaves. The coughs reside and the smile comes back. We won…this time.
It can be hard to explain to family and friends the potential ill effects the common cold can place on an individual with CF. So, with the cold and flu season rapidly approaching, there are some important things to keep in mind about getting “germ smart.”
Getting Germ Smart for People with Cystic Fibrosis
CDC’s recommendations to avoid the spread of germs:
- Avoid close contact
- Stay home when you are sick
- Cover your mouth and nose
- Clean your hands
- Avoid touching your eyes, nose or mouth
- Practice other good health habits
Kat Quinn is the Founder and CEO of Blooming Rose Foundation, a site specifically designed to educate parents whose children have been newly diagnosed with Cystic Fibrosis (CF). She has served as a communication consultant and parent advocate voice to teams and medical boards at Genentech, Aptalis, Abbvie, Spark Healthcare, Novartis, Smiths Medical, and PTC Therapeutics as they develop education tools, medical advancements, and devices to help children and their loved ones fight CF. When she is not working with medical companies and practitioners, Kat connects parents to information, writes on the topic of CF, and is active in government at the state and federal level through her company, Blooming Rose Consulting. She has a Bachelors in social work from Humboldt State University and a Masters of Science in health communication from Boston University. Kat lives and breathes with her family in Red Lodge, Montana.