Long-Haul Effects of COVID Will Not Take Her Breath Away

Brenda DeAnda’s plans for summer 2020 did not include a diagnosis of COVID-19, pneumonia, respiratory arrest, having a ventilator breathe for her, and now that she is finally back home, a portable oxygen concentrator that may be her constant companion for the next year or more.

Instead, Brenda was planning to head from her home in Sioux City, IA, to Tempe, AZ, to care for her daughter, Alicia, a kidney donor to her cousin through a paired exchange. Her cousin was in kidney failure, and while Alicia was not a medical match, her gift through a “kidney swap” would be a lifesaver for two patients.

But on the June day that Brenda felt short of breath while walking Bella, her miniature Husky, and then struggled up the five stairs into her home, the caregiver-to-be was about to need lifesaving, too.

A widow since 1994, Brenda’s first call was to Alicia, a hospital nurse. Mom and daughter knew Brenda’s scleroderma, a chronic connective tissue disease that had affected her lungs, would complicate an expected COVID diagnosis.

It did.

At Alicia’s request—and after paying her bills for the upcoming month and putting her computer passwords where Alicia and her brother, Mike, could find them—Brenda drove to the hospital. From there, things became a blur.

Although separated by 1,300 miles, Brenda and her daughter, Alicia, a hospital nurse, check in with each other many times a day. The standing rule is that Brenda has a three-hour window to respond after Alicia leaves a message.

Her scattered memories include texting her daughter “ICU” and feeling tangled in tubes and wires. And when she heard the word “ventilator,” she said to herself, “OK, God, I surrender. You are in charge.”

But Brenda recalls this clearly: “I couldn’t breathe. I just wanted air. It was like drowning … all day long. They keep increasing your oxygen to help, but it doesn’t help much.”

Alicia also felt helpless. With 1,300 miles between she and her intubated mom, her nurse’s training had her picturing far too many worst-case scenarios.

“As a nurse, I knew COVID protocols and that I couldn’t be with her no matter where I lived,” Alicia said. “But as her daughter, not being physically present was hard.”

Brenda wrote in her CaringBridge Journal: “Going through this day by day, it doesn’t seem like I’m making too much progress. But when I talk to friends, they think I’m doing much better. I cannot wait until I don’t need this oxygen anymore.”

For updates, Alicia called the nurses’ station twice a day, factoring in time-zone differences, her own schedule and preparation for the upcoming kidney swap. She played out in her mind everything that might go wrong until, finally, there was some good news: Brenda’s sedation was being lessened, and she was following voice commands.

Feeling more hopeful, Alicia and Mike were still surprised to receive this text from their mom at 3:56 p.m. July 3: “I’m awake. Love you guys.” Next came a request for Alicia to post an update on Brenda’s CaringBridge site, because Brenda had forgotten her password.

Alicia had started the CaringBridge site when Brenda entered the hospital. With friends at past jobs in the meat-packing industry and the U.S. Postal Service, and family as far away as Mexico, where Brenda’s late husband, Narciso, had grown up, Alicia couldn’t possibly keep everyone updated.

“I’m thankful that Mom and I discussed how to communicate with everyone about her health battle,” Alicia said. “I had her check CaringBridge to make sure her story was worded as she wanted, and that night she saw your thoughts and comments. The next morning, she was on life support.”

During the time Brenda was on a ventilator, Alicia provided near daily CaringBridge updates. Knowing her mother’s deep faith, she also asked for prayers, which were delivered in abundance.

Brenda, with her faithful companion, Bella, said she is thankful for the support of her CaringBridge community. “Since I’ve been home from the hospital, people have said, ‘We’re so happy CaringBridge is there,’” she said. “They felt like a part of it. It drew them in.”

Brenda returned home after 21 days, albeit tethered to an oxygen machine. Now she writes her own Journal updates, including this one from Aug. 6, after the successful kidney swap: “Thank you, Lord, for keeping Alicia and my niece safe.”

Stable health for her favorite kidney donor and recipient—Alicia is back at work, and her cousin may share her own story in the future—is inspiring Brenda to not feel overwhelmed by the long-haul effects of COVID.

Walking Bella, getting in her customary 10,000 steps a day and riding her electric bike are still a ways off. But Brenda’s focus is nonetheless on gratitude. “I took air, and breath, for granted,” she said. “But I am now so grateful and so thankful for every minute and every day.”