Searching for footing in a life nearly extinguished by COVID

WESTFIELD, Ind. — On line in the hospital atrium, Kari Wegg folds her hands in her lap while husband Rodney pilots the wheelchair, moving forward together a few feet at a time, their progress halting but methodical.

After all the years the two have worked in hospitals — and the long months last summer and fall that Kari spent confined to an intensive care bed — what’s another half hour now?

“Any risk factors for COVID?” a hospital employee asks when they reach the vaccine check-in desk.

“Double lung transplant for COVID,” Kari says, quietly.

“All right, it’s your graduation day today,” the worker replies.

EDITOR’S NOTE — First in an occasional series, COVID’s Scars, looking at how some of those battered by the pandemic are trying to recover after a year of pain and loss.

Behind her mask, Kari, a 48-year-old career nurse, rolls her eyes. Before the coronavirus nearly killed her, any thought of graduating from the life she shared with Rodney had never entered her mind.

Back then, arriving for shifts at St. Vincent Women’s Hospital in her purple muscle car, she relished the satisfaction she felt caring for sick or struggling newborns. At home, she herded and hugged the couple’s 13- and 14-year-old sons, Gunnar and Gavin, and doted on four dogs, three snakes, and the 10 Bengal cats she and Rodney bred as a sideline. In between, she read tarot cards and shot target practice and planted vegetables. And on Saturdays, she donned a Viking robe and battled other reenactors, armed with a 10-foot spear. Rodney called her a “badass nurse.”

Now, like so many health care workers battered by the pandemic, she is searching for footing in a life after COVID. But the scars across her chest and neck are constant reminders that it takes much more than a shot in the arm to get there.

Thirty minutes later, she clutches Rodney’s hand and steps into the gray-green of a March afternoon. And then it’s a blur.

On the sidewalk, Kari’s legs, scarred by intravenous punctures, wobble, then surrender to gravity. Rodney, a 6-foot-2 respiratory therapist used to lifting and turning incapacitated COVID patients, grabs her before she crumples to the pavement. Her hand, quivering from tremors that are a side effect of one of 29 daily prescriptions, loses grasp of his. And bits of the doubt and fear that welled up during those long weeks in the hospital and rehab creep back in.

“I started thinking a lot about death and I’m not prepared for that,” she says. “Rodney always told me not to worry, that he’s got it, that he’s going to take care of me, that he got me this far and everything is going to be OK. But I worry that it’s not.”

The pandemic filled headlines weeks before it showed up in hospitals around Indianapolis. By last April, though, rising caseloads were ratcheting up the pace of Rodney Wegg’s 12-hour shifts at IU Health North.

“I’ve never worked so hard in my life,” he says. “They just started coming in one, two, three at a time, and then it was like everyone who walked through the door was struggling to breathe.”

During an ordinary year, he might see three or four patients suffering from acute respiratory distress syndrome, a life-threatening condition in which fluid floods into the lungs. Now, the hospital in suburban Carmel had 18 ARDS patients at once.

Back home, he stripped off his scrubs in the garage and tossed them straight into the washer, trying to avoid spreading COVID to Kari and the boys. But the couple, who met in 2004 at a round-the-clock Mexican restaurant favored by hospital workers getting off nightshifts, were matter of fact about his odds of getting the virus.

When the tickling cough started in the second week of July, Rodney thought it was allergies until the COVID test came back positive. Kari was not caring for coronavirus patients, at least not knowingly. But she was still feeling the residual effects of a bout with pneumonia and by that weekend, she was laboring to breathe.

“I think I’ll be OK. I just feel awful,” she texted her sister, Kelly Garcia, from a room at Ascension St. Vincent. Days later, though, with oxygen levels in her blood dropping, doctors moved her on to a ventilator.

Sedated into a coma, Kari’s condition seesawed. CT scans showed her lungs clogged with scar tissue, fluid and inflammation. Even on the ventilator, her respiratory system was failing, until the only option became hooking her to a machine built to take over for the lungs, known as ECMO. Rodney had been a respiratory therapist for 18 years, but nothing had prepared him for this.

“I feel like I’m trapped in a Lifetime movie,” he posted to co-workers, friends and relatives following Kari’s case. “So much information, so many paths to take, so many decisions to make not knowing where they’ll lead.”

And the most painful decision, one doctor warned in an August call with Rodney and his wife’s siblings, was days away: whether to disconnect Kari from the machine keeping her alive.

“Hey little girl, we don’t have a lot of time here,” whispered Garcia, who had flown in from her home in Idaho to sit by Kari’s bedside. “If you want to live and raise your babies, you’ve got to fight.”

Inside the Weggs’ yellow colonial, on five acres north of Indianapolis, Rodney had been parceling out limited information. But sitting down with the boys and their grandmother, there was no hiding it any longer.

Kari’s chances for recovery were so poor that they’d likely disconnect the machine that had taken over for her lungs, he explained.

“And I was terrified because I didn’t want to be without my mom, and my Dad, he didn’t want to be without her either,” 14-year-old Gavin says.

At St. Vincent, Dr. Sangeeth Dubbireddi, cycling back on duty after time off, stopped by the comatose nurse’s room. Working in intensive care, he had tried not to become too emotionally invested in patients. Over the next few weeks, though, Kari’s case would come to feel personal, as if she was one of the nurses battling the pandemic alongside him.

The survival rate for patients like Kari was not encouraging, he told Rodney. Still, the damage to her body was almost entirely confined to her lungs.

“I kind of had to plead with him a little bit to give me some more time. And if she doesn’t make any improvement, then we’ll know the answer,” Dubbireddi says.

Afterward, sitting in the parking lot, Rodney cried.

As staffers worked to stabilize Kari, Dubbireddi called hospitals with lung transplant programs, seeking one willing to take a COVID patient. Northwestern Memorial Hospital in Chicago said they would take Kari — if her body was freed of the virus. The task of preparing her for transfer was complicated by internal bleeding and by a blood infection.

“Everybody was getting anxious because we felt like we were so close to the finish line and it felt like … the wheels were coming off,” Dubbireddi says.

On the first Saturday in September, with the transport ambulance waiting outside, Dubbireddi called nurses, technicians and other caregivers into Kari’s room. They formed a semi-circle around her bed and joined hands while a chaplain offered a prayer.

“Then we held on to the silence,” eyes closed, focused on transferring their hopes to Kari, Dubbireddi says. They knew her only because of COVID. But she was one of their own.

“Kari Will Prevail. Our God Will Not Fail.”

The Facebook page dedicated to the nurse’s case had a name now and a mission. But family photos Rodney brought to show doctors in Chicago underscored the enormity of the challenge.

“It was so striking to see how different she looked before this hit her,” says Dr. Ankit Bharat, the surgeon who directs Northwestern’s lung transplant program. “Her whole body had been really swollen. She had all these tubes coming out of pretty much all over her body. And I frankly could not recognize that this is the same person.”

Kari’s birthday came and went with the nurse suspended between coma and consciousness. But as hospital staffers worked to ween her body off seven weeks of sedation, she began to stir.

“Hallelujah!” Garcia announced online. “Last night Kari broke through her wall.”

Gazing out the hospital window, Kari noticed that the green leaves of summer were now golden.

“What happened?” she mouthed to Rodney.

“You need new lungs,” he said.

With Kari able to follow commands, the transplant process could move forward. For COVID patients, though, it was still a path in the making.

Before the pandemic, doctors at Northwestern performed about 40 lung transplants a year. Transplants to COVID patients, though, were something new: By the end of September, the procedure had been performed on just 15 such patients worldwide, including four in Chicago, as doctors puzzled over the risks that the virus could recur in the transplanted lung and that virus patients might be too weak to survive.

Before doctors would give Kari new lungs, she’d have to undergo a series of tests, a surgical procedure and therapy to stabilize and strengthen her body.

At September’s end, though, she was added to the transplant list. When doctors rejected one set of donor lungs as not healthy enough, they rescheduled surgery for Oct. 2.

“When we opened her chest, both lungs were completely damaged and destroyed,” Bharat says.

Over 10 hours, he and others worked to stem internal bleeding while a bypass machine kept Kari alive. Then, they replaced her lungs with those salvaged from the body of anonymous donor.

And for the first time in 2½ months, she drew a breath on her own.

For two weeks after surgery, Kari struggled to focus on something besides the hurt.

“All I could think of was keeping the pain to a minimum and that was really hard,” she says. “They’d cracked open my whole chest like a drawbridge.”

Blood clots complicated her recovery. Easily winded and short of breath, she went back on a ventilator. As the month turned, though, advances outpaced setbacks. On Nov. 10, she stood with assistance as Rodney captured the moment on his phone, and with a walker she took a few small steps.

“YOU GO, GIRL!!!” a co-worker from Indianapolis posted.

After a move to rehab in mid-November, she continued to gain strength. But it was offset by doubt. With visitors restricted because of resurgent COVID cases, the days stretched on. She yearned for Rodney’s cheerleading; her husband had been splitting weeks between Indianapolis, where his mother was caring for the boys, and Kari’s bedside. Now she had hours alone to ponder what lay ahead.

What if the lungs failed? If that happened, where would the boys be without a mom? If she lived, would she ever be strong enough to return to nursing?

“I would be alone at 3 a.m. and I really felt that loneliness,” she says. “My life had just changed so much … and it really brought home how fleeting things really are and that I can’t miss out on the rest of my life.”

On the morning of Dec. 1, Rodney drove toward the rehabilitation center. Thinking about all they’d been through, his eyes welled with tears.

“It’s been an emotional ride. But we made it to the end,” he told hundreds of followers on Facebook, minutes before Kari was discharged.

She would need to see doctors at Northwestern frequently for another two months and Rodney had rented a small apartment near the hospital to make that possible. But for the first time since summer, she would hug her boys again. And the rest of her life was waiting, just outside the door.

The sun won’t rise for half an hour yet. But Rodney’s already at work, and those boys won’t wake up on their own.

“Gavin! Get Gunnar up now!” Kari hollers, her voice ricocheting up the stairwell with startling power given that its coming from lungs on a second go-round.

“I just breathe in and let it go,” she says. Then the minutiae of the day takes over.

Leaning over a pan of French toast, Kari reminds herself to avoid the eggs because her immune system can’t chance salmonella. She yells to Gunnar that it’s 7:42 and he better make that bus — a mom whose hands are still prone to tremors can’t drive him to school.

When Kari came home at the end of January, it felt like crossing a finish line, Rodney says. She’s strengthened enough since then to talk about a future of family vacations and riding a motorcycle. But she still faces hurdles, along with everyone else in the household.

The 10 cats had to be sold because they carry bacteria that might endanger Kari’s health. Heating vents throughout the house are missing their covers and walls are bare, as Rodney, his mother, Katie, and contractors finish weeks of repainting surfaces and cleaning out ducts to protect Kari’s new lungs.

There are umpteen medications to track, and insurance claims and bills to deal with. There are biopsies and an incision that has refused to heal. In between, Rodney tries to get Kari walking the aisles at Hobby Lobby to build her strength. The shakiness in her legs has him worried she’ll fall when he’s not around.

“It feels like I’m being a little bit like her parent, but I have to be,” he says.

The challenges go beyond the physical.

Kari followed her mother into nursing. The job came to form the core of her identity, along with motherhood.

“Taking care of babies is such a blessing, to hold them and to keep them alive,” she says. “When am I going to get back my endurance and my stamina and be able to do 12-hour shifts?”

The hospital where she worked has told her that if and when she is ready to come back, they’ll have a job for her. But like other hospitals with employees incapacitated by COVID, it recently informed her she’d need to go on long-term disability and off the payroll.

Disability payments should make up for most of the lost income for now, but after years of two paychecks, she worries about balancing the household budget. Rodney has drained his 401(k) to pay for the renovation.

She also worries about how long her new lungs will last, despite reassurances from doctors. Until the pandemic, transplant patients who survived for 12 months after surgery lived for an average of nine years, Bharat says. But those patients are usually older and suffer from chronic lung disease. COVID survivors, who are generally much younger and otherwise healthier, could live longer.

Still, the very fact that most COVID patients with transplants were quite healthy before getting the virus leaves many unprepared for the physical and emotional climb after surgery.

“It’s one thing if you’ve had a chronic condition that you’ve kind of learned to overcome … but these patients like Kari, they’ve been completely normal. They’ve never thought about a life-and-death situation. So the anxiety, the post-traumatic stress of almost dying could potentially take a long time to overcome,” Bharat says.

At the Wegg house, each week brings moments of reassurance and celebration. In February, Kari, Rodney and the boys went out to dinner at a restaurant for the first time. In March, she reunited with the Viking reenactment group, though she’s not strong enough for a return to the battlefield.

“It’s her same personality, she’s just toned down a little bit because she’s just really tired,” said Dana Downing, a friend who leads the local reenactment group. “She just keeps on focusing on what she can do, rather than what she can’t do.”

For now, that means quiet days at home, knitting and reading. She’s supposed to work on rebuilding her strength, but dislikes activities that feel like exercise. So she’s trying to get her stamina back by standing at the sink to wash dishes, and cleaning around the house.

It’s not the way things were before COVID. But life is measured differently now.

“Wow, I can’t believe what I’m seeing,” says Dubbireddi, the Indianapolis doctor, studying Kari’s face during a Zoom call with the couple — the first time he’s seen her she left his care in a coma.

Kari’s eyes sparkle and her smile beams, though her neck is pocked with scars. And Rodney reaches over and takes her hand.

AP videographer Teresa Crawford in Chicago contributed to this story.