CF and COVID-19 in Seattle
By Devin Wakefield
I went to CF clinic at the beginning of March, the weekend after the first person in the US died from COVID-19, the illness caused by the novel coronavirus also known as SARS-COV-2. Actually, three people died from the virus up until that point and it took me by surprise. The first confirmed case of the virus was a man who had returned from Wuhan, China, the epicenter of the outbreak, in mid-January. From the news at the time, it sounded like he had self-isolated right away and had minimal contact with people prior to diagnosis. Evidently, the virus had spread anyway. At that time, we did not have a way to know the extent of infection due to the faulty testing kits from the CDC. Then COVID-19 got into a nursing home with elderly patients whose immune systems are weak against the virus and wreaked havoc. Before this news broke, I was excited to see my FEV1 after three months of Trikafta. After the deaths over the weekend, I would have been happy with the same FEV1 numbers so long as I was assured of never getting this risky new virus.
That clinic day, at the University of Washington Hospital & Medical Clinic, things looked different the moment I walked in. The mask & hand-sanitizing station at the front door only had hand sanitizer, and two guards stood inside the entrance asking if I was experiencing symptoms such as increased cough or a runny nose. Since I was experiencing less coughing, I answered no, but I think if I said yes, they may have given me a mask, which I usually pick up. I was fine forgoing a mask for the moment because I knew when I got to the pulmonary testing lab, they would give me one there, to reduce the risk of my bacteria could spread to other CF patients.
Inside the clinic, I asked my Trikafta-related questions first. My time with Trikafta so far, in case you’re wondering, has been great: way less coughing and mucus, reduced dry mouth, increased energy, easily controllable blood sugars, no need for Miralax anymore, but just as many enzymes as before. Then I asked about the novel Coronavirus. My doctor confirmed reports that the elderly and those with chronic conditions were a higher risk for a severe case. However, my doctor also thought that my relative youth & great experience on Trikafta put me at a lower risk compared to a CF patient close to transplant. Of course, we both agreed I should take precautions to reduce my risk. We both agreed it could cause hemoptysis, a problem I tend to struggle with and am especially at risk for during winter. I decided to avoid public transit and to talk with my manager at work about telecommuting.
I work at Microsoft as a software engineer full time, and we already had policies encouraging telecommuting & taking sick days if anyone is not feeling 100%. With the new outbreak, managers pushed to make sure everyone had the resources & tools set up for telecommuting, just in case. My manager said I could work from home the rest of the week. As the first week of March progressed, Microsoft started responding to news of the increasing spread of the outbreak and started encouraging everyone to work from home. They also assured hourly workers would be paid for their sick leave and pushed all managers to make sure every employee who did not need to be in the office was working from home. By the end of the week, Microsoft told everyone to plan on working from home until the end of March.
Luckily, I had the foresight to hit the grocery store before the end of February & stock up a bit with extra canned goods. In March, I checked Google Maps to see when the fewest people would be at the store for when I need to restock. I sneaked in early Thursday morning for some extra milk and saw with my own eyes the ransacked toilet paper, water, and rubbing alcohol sections. Rubbing alcohol I understand, but I didn't and don’t think this new virus has been giving people diarrhea. I get the impression folks are preparing for an earthquake as well as the virus, so they can get both disaster-preparedness to-dos checked off. Plenty of soap bars were available, though, ironically!
Mentally, I have been able to stay calm. I can chat with friends easily online, on the phone, or with a video call. I have avoided the gym and found workouts I can do from home. Instead, I have gone running outside to practice sprinting from sick people. Exercise helps me acknowledge and process my frustration. I feel angry that I must stay indoors when I am well and have worked so hard for my health. I am still adjusting to working from home & staying focused. I know the virus can do serious harm, though, so I try to focus on resting & being ready for when things go back to normal.
By mid-March, the impact has greatly increased since writing the above. My otolaryngologist called to cancel an appointment I had 3/16, and I am uncertain my April appointments will be kept. The governor has ordered all cafes and restaurants to close, and he has banned gatherings of more than 50 people to slow the spread of the virus. Meanwhile in Australia, the number of cases there has dimmed my hopes for a seasonal dip in cases as warm weather comes to Seattle, which tends to rain through June. I plan this week to get 3-month supplies of all my meds and getting ergonomic furniture for a home office. I know not everyone can work from home, so I hope our nation can get it together to provide health care to those without insurance or else this pandemic will continue much longer.
I’ll see you on the other side! Keep hope for the future and make sure your life is worth living. I am dreaming of the mountains and planning some camping and backpacking trips for when this wild time concludes. I hope we all get through unscathed.
About the Author: Devin is a USACFA director. He lives in Seattle, Washington. He grew up in Palo Alto, California, and is 28 years old. Diagnosed at birth, he hopes to one day defeat CF with a giant flaming sword. He enjoys hiking, napping, killing germs, and eating all things dairy.