From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices to our blog. In honor of May being Cystic Fibrosis (CF) Awareness Month, we are shining a light on people directly affected by CF in our #CFStrong series. Today’s guest post comes from Christie Salema, a CF parent and leader of Team Trevor.
As a mom to a 21-year-old who has Cystic Fibrosis (CF), we have been down in the trenches battling this disease for a long time. The abrupt arrival of the coronavirus (COVID-19) has been strikingly disruptive for us and the entire CF community. The day-to-day work of living with CF has not changed, but this unwelcome viral intruder has added a layer of worry that sat firmly in the background most of the time.
As if living with CF were not complicated enough, let’s add COVID-19 into the mix, shall we? Not to mention, we only got to celebrate TRIKAFTA™’s arrival and impact for four months before being hit on the head with COVID-19. Unfortunately, it was not much of a lasting celebration.
Let’s take a look at some of the issues that are likely running through people’s minds in the CF community:
A New Virus
Folks in the CF community are knowledgeable about the germs that typically cause problems. We can pronounce them correctly, know which medicines will help, and know how they are administered, as they are a part of our general parlance. This virus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) aka COVID-19, is new. That means nobody really knows much about it, especially in the context of how it will affect a person with CF.
Have you been combing through the Facebook CF groups looking for updates about those individuals who have CF who have gotten COVID-19? Me, too. This new, unknown foe really creates uncertainty and fear—and rightly so. I keep looking so I can cheer from afar as COVID-19 is defeated by the CF community.
Access to Care Teams
My son has been with his doctor since he was 4 years old. Since his doctor happens to be older, he has been asked to stay at home to protect himself. But, what if he is needed? How will my son see him? Telehealth? I guess so, but this is all new (there’s that word again). How do you listen to someone’s chest sounds via telehealth? We have never done it before, but I’m sure we could figure it out.
Where we live, all well-CF visits have been postponed. It might be this way all over the country. This population knows better than to trek through a germy hospital or doctor’s office. But, what if you need to be seen? I’ll bet this creates some concern among the CF community, as it does for us.
How long do you typically wait for a bed on a floor on a good day? At our local hospital, it is never, ever fast. We might wait a day or more to get a bed. Will there be a bed available if he needs one with this virus tearing through our country? We are accustomed to waiting but we have never thought for a moment that there just wouldn’t be space. That is a possibility right now, and it is a very unsettling thought.
Access to Medicines
Ah, medicines, the staple of a CF house. What happens when the entire world is suddenly adding to the demand on pharmacies, pharmacists, manufacturers, and insurance companies? Maybe you also spend too much time on the phone ordering refills like we do. What happens when the entire country is doing the same thing? I guess we will find out.
We are a group that has been connected online for a long time, working as a whole to move the needle forward on all-things-CF. That means we will support each other from afar, will share information, and hold each other up. This community has passion. How dare a new virus upend the forward motion that the CF world has seen over the past several years?
I have no doubt the response from this community will be nimble as we adjust to this new norm. We are good at staring down hairy situations that make most mere mortals cringe. And this is important…living with CF makes people and families strong. If ever there was a group to stay strong against COVID-19, I firmly believe it is our CF community.
“If ever there was a group to stay strong against COVID-19, I firmly believe it is our CF community.”
It strikes me that the CF community and CF families are equipped with superpowers just because living with CF (and all that it entails) is our collective norm. We can use these superpowers to get through this pandemic.