Mother Kirstin Paquin is not typically anxious, but potential ventilator shortages have stirred new worries about her daughter who is at higher risk of infection.
Kirstin’s first daughter, Linley, was born with cystic fibrosis, a genetic disease that affects the lungs and digestive system.
It being their first child, Kirstin and her husband Sam managed Linley’s medications, treatments and doctor visits in the same stride any new parent adjusts to caring for a child.
“To us, it’s a part of our lifestyle,” Kirstin said.
When the COVID-19 pandemic arrived, that lifestyle shifted to complete isolation.
According to the Cystic Fibrosis Foundation, cystic fibrosis causes excess mucus in the lungs which traps germs more readily, leading to persistent lung infections and increased risk of respiratory failure or other complications.
This makes minimizing contact with germs a concern for cystic fibrosis patients in the best of times. During a global pandemic of a respiratory illness, those germ concerns are heightened to the point of anxiety and fear.
If Linley develops any kind of lung infection, she might need a hospital stay and a ventilator to save her life.
These days, Kirstin worries, “Is there going to be a ventilator available if I need it? Would I be considered a priority patient?”
A Terrifying thought
The situation is further complicated by cancellations of regular check ups.
Patients with cystic fibrosis typically have quarterly visits at specialty clinics. Those clinics are often located in hospitals. To reduce exposure to coronavirus, many of those appointments are now being completed over the phone — but Kirstin said that doesn’t do enough.
“The issue with not having these visits face-to-face are that patients are not getting their lung x-rays, blood drawn, sputum samples taken or lung function tests performed. All of these tests help catch lung infections early with the hope of being able to treat the infection before much damage to the lungs can be done,” she explained.
“These virtual appointments are resulting in more cystic fibrosis patients getting sick ... making the choice to be admitted to a hospital where you are increasing your risk of contracting COVID-19 at a time when your lungs are not at their best is a terrifying thought.”
To prevent illness, the Paquin family is adjusting to an isolated life. Kirstin is a stay-at-home mom and Sam made special arrangements with his employer to work from home. Their prescriptions are mailed. Family and friends have helped them by delivering groceries.
While her family and others have taken disinfecting to a new level, shortages of some supplies is concerning.
“The way many of us are living right now is how people with compromised immune systems live every single day. It might be new to many of us, but to millions of people all over the world these safety measures are part of everyday life — trying to avoid exposure to germs and viruses that could potentially put their life at risk. So not having access to everyday supplies like hand sanitizer, Clorox wipes and masks creates a lot of anxiety for those people,” Kirstin said.
Kirstin keeps both Linley and her other daughter, 1-year-old Quinn, busy with lots of crafts and outdoor activities. “We make a point to get outside everyday, we have done lots of sidewalk chalk, walk, bike rides and waving to our friends from a distance.”
She said the hardest part is not visiting with family and friends face-to-face.
How long will it last? No one knows, but Kirstin knows from conversations with other cystic fibrosis families that they will be taking precautions far longer than the general public.
Like others throughout the world putting bright hearts in the windows, the Paquins have decorated their front door with hearts to send a message to their community.
“We wanted to spark a little joy, give a little hope and put some color in the world right now,” said Kirstin. “While this is a scary and frustrating time, we are grateful that we have a safe place to shelter. We are grateful for the extra time we get to spend as a family. We are grateful for all the kindness this has brought out in people.”
For more information about cystic fibrosis or to support disease research, visit the Cystic Fibrosis Foundation website at www.cff.org.