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Cystic fibrosis patients practicing heightened physical distancing to stay safe

Posted at 9:01 PM, Apr 12, 2020

CLEVELAND — As we continue to learn new information about coronavirus, research shows the virus poses an increased threat to people with pre-existing medical conditions.

The COVID-19 pandemic has created new worries for people living with cystic fibrosis, a disease that directly attacks the lungs.

Millions of Americans have been quickly forced to make big lifestyle changes, from communicating with friends and family online to wearing protection when leaving the house and working from home.

Some cystic fibrosis patients say they have been practicing a variation of these physical distancing measures their entire lives.

“We are truly taking social distancing to the max,” Andi Valaitis said.

Valaitis has been living with cystic fibrosis since she was diagnosed at just three months old.

Complications of COVID-19 could be especially dangerous for Valaitis and other cystic fibrosis patients.

“There’s a lot of anxiety and a lot of fear about what it will mean if you get this infection,” Dr. Elliott Dasenbrook said.

Respiratory specialists like Dasenbrook are taking proactive steps to ensure the safety of their patients.

“What are we going to do if they get admitted to the ICU or even need a ventilator?” Dasenbrook said, “How do we make sure they get their CF care while they are COVID-19 positive?”

Cystic fibrosis patients are using only telemedicine for routine appointments.

“The CF care centers basically said all virtual appointments. Shut it down,” Valaitis said, “So we were really one of the first groups that said, ‘Okay, go virtual.’”

They’re also ramping up the frequency of their exercises and treatments.

“If you were doing say two times a day or three times a day you’d add in another treatment,” Valaitis said.

Daily cystic fibrosis care consists of nebulizer treatments and the use of percussive vests.

“It’s a percussive machine and it basically claps here, underneath and on my back in the same two places,” Valaitis said, “And it really claps my lungs to get all the mucus and break it up.”

During this time of uncertainty, Valaitis said she’s relying heavily on her family for the essentials.

“We’re not going to the stores,” Valaitis said, “It’s either our parents or a loved one and they’re going and we’re pretty much Lysol-ing them when they come in.”

For CF patients who live alone, delivery and pick-up services have become increasingly important.

“A lot of the big wholesale stores do so I think they’re really trying to utilize that,” Valaitis said, “Because that’s a way that they can load it in your car and you don’t have to touch them at all.”

Valaitis is currently a senior in high school trying to decide where to attend college in the fall.

She’s relying on social media to keep in touch with her peers.

“We started doing online coffee talks so we could at least talk with each other and see each other,” Valaitis said, “My phone battery has been dying because of FaceTime.”

Physical distancing safety measures are likely to continue for cystic fibrosis patients after the pandemic passes.

“Because it’s like, you want to hug everybody,” Valaitis said, “But then you’re like, ‘I can’t touch you.’”

Dasenbrook said social distancing and stay-at-home orders are giving people a firsthand look at what daily life looks like for some CF patients.

“A lot of our patients they send the message, ‘Hey, welcome to our world,’” Dasenbrook said, “What everyone is feeling right now, this fear of capturing COVID-19, is how a lot of CF patients feel their whole lives.”

For more information about how COVID-19 affects cystic fibrosis patients, click here.

To get involved with the Northern Ohio chapter, click here.