By Robyn Petras
As I zipped my Monarch System and stepped on the treadmill for a combination run/vest treatment, I tuned into Ohio’s daily 2 pm press conference led by our governor. My feet carried me with ease. I felt nervous and was deeply saddened upon hearing the latest COVID-19 information. I calmed my mind, thinking I’ve done everything right. I have quarantined at home since March 15th. My husband and I have decided to sleep in separate rooms for the best protection. I longed for a hug and kiss but decided protecting one another was more important. A dry cough erupted throughout the workout and continued sporadically for the next several hours. I remember that same dry cough awoke me at 4 am. I’ve battled extreme inflammation and asthma symptoms for 15 years. This cough felt different than previous times—it was not a hacking, wheezing cough but a simple, dry cough with only one or two coughs at a time and extended times without coughing.
This intermittent, dry cough continued for several hours. Suddenly tiredness swept over me, and I decided that my exhaustion was from COVID-19 mental stress. My body relaxed under a mound of warm blankets and my mind drifted to sleep. Soon, the cough awakened me, and I realized I felt warm. Searching for a thermometer, I decided to take my temperature—99 degrees. 30 minutes later it rose to 100.4. COVID-19 symptoms, presented at the press conference I had just listened to, entered my mind. I immediately called my CF center in Columbus, Ohio and explained my symptoms: fatigue, fever, and a dry cough. My CF team took my symptoms seriously and scheduled a COVID-19 test for 9 am the next morning. I awoke the next morning feeling fine. I contemplated canceling the test because I did not want to use a test kit if not needed. Was I overreacting? I decided to get tested and it was easy, safe, and efficient. It took 20 minutes. I remained in my car for the test and I would get results in 3-5 days.
The following day I felt great, filling the hours with phone conversations, exercise, and Netflix. My lung function remained higher than in the last 15 years. For an added precaution, I decided to return to utilizing airway clearance techniques and nebulizers every four hours. It felt easy enough as that was my lifestyle for the last 30 years, prior to taking Trikafta. My mucus clearing arsenal is vast—I rotate between different devices, such as the Monarch, Acapella, Aerobika, Phillips Ultrasonic Nebulizer, Expand-a-Lung, Vibralung, Power Breathe, and Pari Pep. On day four, I noticed a significant difference in my lungs. Although still breathing deeply and easily, I began expelling extremely think, dark, and infected mucus. With no news of the results, I increased airway clearance and restarted Pulmozyme. Dark-green globs of mucus, the size of quarters, poured out with ease.
Finally, five days after COVID-19 testing, I had an answer. Upon hearing “your test is positive,” my heart started pounding and tears slowly traveled down my flushed cheeks.
Finally, five days after COVID-19 testing, I had an answer. Upon hearing “your test is positive,” my heart started pounding and tears slowly traveled down my flushed cheeks. I took a deep breath. After 53 years of living with the fear of dying, Trikafta had set me free but I was now back in a mental prison. This life-threatening virus took the lives of many innocent people. Would I be next?
I’ve always taken meticulous care of myself and diligently avoided cross-infection with bacteria, yet I still contracted the virus. I have no idea when, where, or how I contracted COVID-19. I felt ashamed, embarrassed, and defeated upon receiving the news. I knew I could react with fear or respond with determination and love for self and others. My next step was difficult. I had to call everyone that I had contact with the previous 14 days. An experience from 25 years ago transformed my thinking—my brother had called me with the news that he had tested positive for HIV. Talk about shame and embarrassment! If he could endure the shame, ridicule, blame, and discrimination, I could endure this virus. With each call, my friends and family listened with love, shock, and concern. I chose honesty and transparency on social media, describing my real and raw story. My objective was to help educate others and put a personal face to the name of this terrible pandemic while affirming the “stay safe, stay home” mandate.
Many years prior, my doctor asked me to gain weight, meditate, and exercise daily. These three suggestions saved my life then and were now key in fighting this virus. Exercise, meditation, and healthy eating, combined with airway clearance every three to four hours, helped me beat COVID-19. After 12 days, my body stopped producing infected mucus! My lung function remained high and I had no shortness of breath, no fevers, no coughing, and no mental anxiety. I remained in daily contact with my CF team. We decided to hold off on antibiotics for at least 14 days so as not to mask viral symptoms. Fortunately, my body returned to my baseline thanks to Trikafta and I did not need antibiotics. My CF team and I decided that I should self-quarantined for an additional four weeks to give my body optimal time to completely heal.
Years ago, I learned to stop asking “why.” With CF, often those answers never come. Survivor’s guilt flooded me. I wondered why I survived COVID-19 with relative ease. Shifting the question of why to what, I wondered what I could do to empower others and what could I learn from this challenge. Much of COVID-19 is out of our control, but we can control our actions and our attitude. We can choose to stay at home. We can choose to protect ourselves and others. We can choose to reach out to others safely.
About the Author: Robyn Petras is 54 years old and was diagnosed with CF at 8 weeks. She enjoys her home in Ohio, surrounded by wooded trails and large rock formations. Having retired from teaching elementary school due to CF complications, Robyn’s passions are social justice work, helping her father with Parkinson’s and riding her Can-Am Spyder. She enjoys connecting with open-minded people. With the help of Trikafta, her bucket list is growing with new opportunities. She looks forward to sharing this new life with her husband, Mike, of 31 years and daughter, Summer, 27. Contact Robyn at firstname.lastname@example.org and on Facebook @robyn.petras.