š« Snapshots in Living Part 2
These are snapshots from my brain after 4 years on Trikafta.
May is Cystic Fibrosis Awareness Month. Throughout the month, I'll share some snapshots of my life since I started taking Trikafta in December 2019.
Act 4: I have to wear deodorant now.
I like to joke that Vertex, the maker of Trikafta, should be giving every Trikafta miracle patient the following:
401K matches: to help us catch up from years of āYOLOā lifestyle.
A full Korean skincare regime: as I am now aging. š
A clothing budget: now that my insides work as expected, I no longer need the diet of two grown men to maintain or put on weight. The pounds I gained in the first Trikafta year were welcome, but I needed a whole new wardrobe!
Deodorant: I had never had to wear it before. The high salt content in my sweat and saliva kept away the odor from my body and the cavities from my teeth.
Act 5: Masks 1
On March 12, 2020, Dave and I opened the door to our apartment as the phone rang; the doctor was calling to tell me not to come to my quarterly clinic appointment that day. It was an appointment I had anticipated with excitement as it was the first since starting Trikafta. It would be the first timeĀ IĀ would get to do a pulmonary function test on the big machine, allowing me to see how much of an impact the drug had on my lungs. The ābig machineā is a more meaningful test to me than my little handheld spirometry device, as those numbers seem more significant. But now,Ā the clinic was canceled. It was the first thing COVID-19 ruined for me.
The following day, the President of the United States declared a state of emergency. In the days and weeks following that, the dialogue over masking stirred.
As a person with cystic fibrosis, I was a masker long before 2020. If you watched the movieĀ Five Feet Apart, you know that people with cystic fibrosis are recommended not to come within 6 feet of each other because of the concern of cross-infection for lung infections. We always wear masks when we attend clinics so that if we pass someone in the hall, we don't risk passing or receiving a parting gift. I also routinely wore masks while traveling on public transport to reduce my risk of infection in those crowded spaces. Who wants to get sick on vacation? Not me.Ā
When the "masking debates" started, much of the cystic fibrosis community kept doing what we had been doing for years and protected ourselves with masks. We knew COVID-19 infection was in respiratory dropletsāsomething we had managed for yearsāand knew masks were the best option. Eventually, everyone else caught on to masking, and for a good year and a half, I felt safe because everyone else was doing it, too. Then the masks came off.Ā Ā
Despite Trikafta, COVID-19 was still a concern for me. I had just gotten this incredible health boost, and I didn't want a pandemic virus to take it all away from me, so I tried very hard to prevent exposure. Ā I was fortunate to have been granted to work from home while others returned to the building that first school year after the pandemic. The day I received my vaccination was a joyous, tearful day, where normalcy seemed within reach.
The summer of 2022 was the first time I got COVID-19.Ā I didn't go to ISTE that year because it still seemed too risky; the delta variant was super active. However, ISTE's COVID-19 outbreak cameĀ homeĀ to me from colleagues who attended. They were new colleagues who didn't know me, my cystic fibrosis, or my vulnerability. I contracted it being one of the only masked people in a week-long coaching workshop. Twenty people in a room for five days, two of us masked. Fortunately, I had years of knowledge in treating respiratory infections; IĀ actuallyĀ fairedĀ ratherĀ well through my infection. I went back to old pre-Trikafta habits of increasing my respiratory therapy and promptly got Paxlovid. But the mildness of my COVID experience didn't stop me from continuing to mask.Ā
I do still mask oftenābut less so now since I got a second COVID-19 infection this winter. The second time I contracted it while being the only masked person in the room.š« So I mask not to protect myself as much anymoreābut because, as a vulnerable person, I know I might be protecting those around me who are also vulnerable or maybe taking care of vulnerable people at home.Ā
Being a masker in 2024 feels like being part of a club. When we spot each other, there's an exchange of knowing glances.Ā Do I wish everyone still wore masks? Not necessarily; I understand that's not realistic. More than anything, I hope for a community where people choose to stay home when showing symptoms. If someone suspects their symptoms are just allergies, I wish they would get tested to be sure.Ā And for those who can't stay home, I hope theyĀ wouldĀ consider wearing a mask whenĀ they'reĀ symptomatic and out in public.
Act 6: Masks 2
As a person with an invisible disease, I have been fortunate to get always to wear the mask ofĀ a normalĀ person. Like people who pass as white or straight have been able to hear the worst of othersāI have been able to witness ableism firsthand, unfiltered. It has shown me how bias and misconception can lead to exclusion.Ā ThisĀ is why I will continue to advocate for both the CF community and all students with disabilities.Ā
May is Cystic Fibrosis Awareness Month. Here are some links to learn more:
Follow Orla Tinsley as she awaits her second transplant.
THE CYSTIC-FIBROSIS BREAKTHROUGH THAT CHANGED EVERYTHING: Read this for another community memberās perspective on Trikafta life.
What life is like on the new ābreakthroughā cystic fibrosis drug
I'm so grateful for the chance to catch a small glimpse through your lens in this series. Thank you for continuing to share, Katie.