Living With Cystic Fibrosis in a COVID-19 World

Columbia Journalism
May 1, 2020 · 7 min read
Caleigh Haber and her husband, Bryan Takayama, organizing Haber’s medication. Photo by Emily Kaszton

By Andrew Howard

When California announced a stay-at-home order on March 19th to fight the new coronavirus, Caleigh Haber didn’t run to purchase groceries, hand sanitizer or mountains of toilet paper. She already hadn’t left her neighborhood for over a month.

That’s because Haber has cystic fibrosis, an inherited disorder that severely damages the lungs and other organs. At 29, she has endured countless hospitalizations, tons of medications and two lung transplants. “There’ve been literally 25-plus times that the doctors have said, no, you’re gonna die from this,” she says.

But COVID-19 presents a new test. Roughly 30,000 Americans live with cystic fibrosis and are all at heightened risk for COVID-19. The experiences gained managing their condition have undoubtedly prepared them for a social-distancing society, but the risks during this crisis loom even larger. As a transplant recipient, Haber is immunocompromised and she believes a case of COVID-19 could prove fatal.

Despite her medical challenges, Haber says that this is the healthiest she has felt in her adult life. You’d never know that Haber — wearing a red, striped turtleneck, clear framed glasses, with her dark hair up in a bun during a video interview — suffers from a chronic disease. Her upbeat voice is not the sound of someone tired of staying at home, even if Haber would rather be using this period of good health to travel.

“Keeping a routine is a must,” said Haber as she sat in her Orange County, California apartment. Since mid-February, she has been walking her dog, cooking healthy meals for herself and her husband, watching a few TV shows, catching up with friends on FaceTime, working out, and practicing calligraphy or macramé. But in between this increasingly familiar routine for many Americans, she will take a lot of medications and log onto “MyChart” to connect with her various doctors.

Haber undergoing home nebulizer treatment to deliver medication directly to her lungs. Photo courtesy of Caleigh Haber

“If you take an environment where you have damaged lungs already and throw on top of that a viral infection that causes an acute lung injury, patients with cystic fibrosis or other chronic lung conditions are not going to be able to tolerate it like you or I would,” says Dr. David Weill, former medical director of the Lung and Heart-Lung Transplant Program at Stanford University. Recalling former patients who died of influenza or other diseases while waiting for lung transplants, Dr. Weill notes that COVID-19’s spread is “particularly profound.”

Haber, like many cystic fibrosis patients, was well aware of the threat viruses posed. Growing up, going out in rain or snow was never an option; the threat of pneumonia always loomed. With periodic hospitalizations, Haber learned early the importance of handwashing and face masks.

The vigilance grew as Haber’s health declined; after a bad case of pneumonia, she spent 19 months on the lung transplant list and got her first pair of new lungs in October, 2015. Her caregivers were determined that, needing strength to fight through the arduous surgery, she not get sick. “When I was with Caleigh, I wouldn’t see people,” said Michael Haber, Caleigh’s brother and former fulltime caregiver.

After her body started to reject the new lungs and Stanford Hospital would not perform a second transplant, she and her family searched the country for a hospital that would. Haber was finally admitted to Ronald Reagan UCLA Medical Center and had to start the arduous process again. Her brother, husband, and father took shifts with her in the hospital as they took distancing and hygienic precautions.

After a long recovery, Haber’s lung function is as strong as it has ever been, but COVID-19 still poses a threat: as a transplant recipient, Haber takes immune suppressing drugs that weaken her ability to fight off viruses. So she and her husband, Bryan Takayama, pay close attention to influenza rates and news about diseases.

As early as January 24th, hearing about COVID-19, Takayama emailed Delta Airlines to ask how the airline would enhance sanitation efforts. By mid-February, Haber had been told by a friend in the pharmaceutical industry to start taking serious precautions. She stopped all travel; her husband, a consultant, can work from their apartment and her father leaves groceries at their door.

Although Haber would rather be outside enjoying her good health, she has become an expert at staying home. As many are baking bread for the first time, Haber, former pastry chef, is used to experimenting in the kitchen. She loves crafts; her walls are covered with macramé and she is working on a portrait of Frida Kahlo.

Living next door to beautiful southern California hiking trails, she tries to get outdoors as often as possible, but keeps a healthy distance from other hikers. Rain deters most people from hiking, but that allows Haber a chance to hike without worrying.

Managing her health, medications and insurance also keeps her busy; Haber has over 42 prescribed pills to track and six medical teams, from transplant surgeons to gastroenterologists, to communicate with. She also dedicates time to helping other cystic fibrosis patients through her organization Fight2Breathe, which educates those new to the disease and helps fund research.

Haber promotes all these activities and documents her health on her colorful Instagram. A photo showcasing an egg and spinach breakfast she put together is accompanied by a caption with fun facts about double lung transplants. She also shares the realities of cystic fibrosis — photos of her wearing face masks predate COVID-19 — and talks openly about her new medication.

As many feel the loneliness of social distancing, Haber can relate. “CF and other diseases are very, very, very isolating,” she says. In her 20s, when Haber started to need more help, her mom would drive over an hour to visit her at Stanford Hospital after a long day’s work. Worried about her getting exhausted, Haber insisted that she visit less frequently. But that meant that “she couldn’t see me in the hospital for a couple days at a time,” Haber recalls. “I was incredibly lonely.”

Although cystic fibrosis patients live all across the country, they cannot cure loneliness by spending time together: the condition makes each one prone to infections that could spread to another. Once, specialized summer camps encouraged children with cystic fibrosis to bond, but that ended as doctors realized that kids were spreading infections.

Today, cystic fibrosis patients follow social distancing religiously. Haber recalls making her first CF friend at Stanford Hospital. “We would go to the halls and wear masks and gloves and sit really far away and have conversations for hours.” Now social media allows the CF community to flourish online.

A former professional pastry chef, Haber has been using her time at home to cook a lot of new recipes. Photo courtesy of Caleigh Haber

Both Haber and Takayama hesitate to blame people who skirt the social distancing rules. But Haber admits her frustration, “the fact that people are staying in the house and they’re not going to a bar, like that’s a big deal.” she said. “Come on.”

She thinks, “at least you’re in your home, you’re comfortable and you have everything you need. You’re not in a hospital room being knocked on every single second, stabbing you for months and months and months at a time.”

For all the challenges that have prepared Haber to handle COVID-19 better than most, concerns remain. Haber has still been periodically hospitalized post-transplant for distal intestinal obstruction syndrome, DIOS — essentially extreme constipation that requires medical intervention. On Instagram she jokes about how it makes her look pregnant.

But Haber can’t pretend that she isn’t anxious; only a few months have passed since her most recent DIOS hospitalization, and she worries about having to go back. Still, “the hospital is your safe place, even if it’s tough. Now it feels like I can’t go.” And with limitations on visitors, she might have to stay there alone.

She worries, too, about pre-transplant cystic fibrosis patients. “There was a period in my life for years that I was going to a different clinic every single day,” she recalls. That could be dangerous for CF patients and families during COVID-19.

And she worries about access to medication. Haber is constantly tracking how many days worth she has of each drug and when she needs to order more. “I am very compliant, but everyone is so busy that it’s hard for pharmacists and UPS to get things on time,” she said. She has already seen COVID-19 effect the medication supply chain: Haber came one day away from running out of a gene therapy drug she’d re-ordered two weeks prior.

With the stakes so high for cystic fibrosis patients, Haber is not planning on breaking her routine anytime soon. While other Americans hope to return to their routines in summer, “Caleigh and I are not going to be able to return to our normal lives for a very long time,” Takayama says. “Not until there is a treatment and a vaccine.”

Andrew Howard is a student in Columbia Law School’s Class of 2020 and also enrolled in a course at Columbia University’s Graduate School of Journalism.

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