BREA, Calif. — Some patients who were infected with COVID-19 continue to feel the symptoms even after testing negative for the virus.

Because of that, an Orange County hospital has developed a recovery program, known as COVID Long Haulers, for patients who can continue to feel symptoms and require a wide variety of treatments.

St. Jude Medical Center developed the post-COVID recovery program, which includes a mix of different therapies ranging from physical to mental health services.

It was designed to help patients like Amy Behen.

Behen visits St. Jude Medical Center in Brea twice a week as part of the new program. During her recent visit, she underwent an exercise using playing cards. Occupational therapist Rosemary Kidd asked Behen to only pick up the even-numbered cards on one row and odd cards on the next row, switching back and forth.

Kidd said the activity is an exercise in divided attention and designed for patients like Behen to work on keeping calm while remembering the directions to complete a task.

“We’ve done a lot of work on pacing, on breathing, on relaxation," said Kidd. "We want that heart rate coming down, and with the post COVID patients, cognitive fatigue, results in high heart rate. They have a high heart rate, following COVID.”

The exercise is supposed to help Behen with a problem she said she’s been dealing with for months now: brain fog.

“I have a really hard time remembering what I’m supposed to do next," said Behen. "I have to write down everything."

It is one of the lingering effects Behen has been dealing with since recovering from COVID-19.  She first tested positive on March 23.

“I was just scared," she said. "Your first thought back then was that you were going to die."

By early April, Behen tested negative and has continued to test negative. She never had to be hospitalized but said she has had lingering symptoms. The worst has been fatigue.

Behen is a working mom and said she used to be able do it all, from managing a team of engineers to helping care for her two daughters. Now, after just a few hours of work, she needs a few hours of sleep.

“[I] can’t-get-off-the-couch kind of sleep," she said. "I have two small children — I can’t do much for them in the evenings."

It’s unclear how many people have long-term effects, but according to two Harvard Medical School studies and surveys of patients, 50 to 80% of people who had COVID-19 have lingering symptoms.

Behen is also an athlete. She even coached her daughter’s basketball team, but doing simple exercises such as a few reps of stepping up on a block and lifting just a few pounds has her winded. She said it has been frustrating.

“It’s really hard for me not to be able to do this stuff now because it was so easy for me to do it before,” said Behen.

Dr. Natalia Covarruvias has seen long-term effects in patients who have been hospitalized and also patients like Behen, who were able to recover at home.

“Their ability to get up from a couch, make it to their bed, being able to walk short distances within their house can be difficult because they’ve had changes to their heart and lungs," she said. "And that effects how they can function."

To help patients deal with some of those symptoms and other lingering effects of COVID-19, a team at St. Jude Medical Center created a program that includes everything from speech therapy, breathing exercises, physical exercises you might see at a gym, to activities one can do anywhere, such as walking down a hallway.

The program also helps patients think about how to make tasks easier as they go through the recovery process. For example, Kidd took Behen into a kitchen at the medical center and asked her where her pots were located, and where the items she uses most often were located in the fridge. 

Kidd explained if things were easier to reach, the amount of fatigue Behen might feel from cooking a meal could be reduced.

Many people were involved in creating the program, including physical therapist Val Warren who has been working with Behen for several weeks now.

“For this to really have such an impact on just daily activities that we all take for granted, especially for an athlete, it is troublesome," said Warren. "It is heartbreaking. I’m glad that we have this program so we can help folks like Amy get back to normal."

Warren said that even after just a few weeks, Behen has shown improvements, including more energy and even being able to reduce her anxiety around doing everyday things such as making a trip going to the grocery store.

“I think that’s what’s great about our program is that we’re actually bridging the gap and making the recovery quicker than if folks were kind of just trying to struggle on their own and to figure it out,” said Warren.

Just two days a week for the past few weeks, Behen said she has been able to do more and feel better.  

“I couldn’t do any of this stuff before I got here,” she said.

Behen said she knows she still has more work to do, and it is going to take time.  

“I’m most looking forward to playing basketball with my kids,” she said.

Behen is determined to do it, and is hopeful she will feel like herself again.

For more information about the program, you can call St. Jude Medical Center at (714) 578-8720 or email stjudewellness@stjoe.org.