It took Nina Coletta 72 days to get back home.
From a sixth-floor picture window at Spaulding Rehabilitation Hospital, she could see her East Boston street on the other shore of the Mystic River. She yearned every day to return to the blue-shingled house that she’d left in April, whisked away by ambulance in a terror of breathlessness from COVID-19.
But when Nina finally arrived at her doorstep in late June, amid cheers from well-wishers crowding the sidewalk, she could barely feel the familiar ground beneath her feet. She had lost nearly all sensation below her ankles. Legs encased in braces, the once active 60-year-old who loves to dance leaned on a walker, weeping with joy and thanking her friends as they yelled, “We love you, Nina!”
It was Day 72. But clearly many more days of recovery lay ahead.
More than 11,000 people have been hospitalized in Massachusetts with severe COVID-19 since the pandemic began. Most have been discharged, amid song and applause. But it’s likely that few have fully resumed their previous lives. Many linger in rehab facilities and long-term-care hospitals; others are home, trying to get back on their feet despite the persistent aftereffects of a prolonged hospital stay.
Together these survivors form an undercurrent of struggle and disability that will challenge the health care system and the economy — even before a possible second wave of COVID-19 crashes in.
“As the number of patients admitted to acute care hospitals starts to go down, the rehab hospitals are filling up,” said Dr. Robert Krug, board chairman for the American Medical Rehabilitation Providers Association. Weeks in an acute care hospital can lead to months of recovery, he said.
And COVID-19 adds confounding new challenges, said Dr. Ross Zafonte, Spaulding’s senior vice president of medical affairs, research, and education. “There are some unique and individual features of COVID that we don’t understand,” he said. “I suspect we’re going to have a group of people who are going to remain impaired.”
Nina Coletta doesn’t remember much about her early days in the hospital. She and her husband, Edmund, had both tested positive for COVID-19. But while Ed, who is 63, started to feel better, Nina spiked a fever. When her breathing became so difficult she couldn’t talk on the phone, Ed called 911. It was April 12, Easter Sunday.
She was taken to Massachusetts General Hospital. Several days of oxygen treatment failed to improve her breathing, and the doctors recommended a ventilator, which would involve putting a tube down her throat into her airway. It was a frightening prospect for Ed and their three children: She’d have to be kept unconscious to tolerate the breathing machine, and they’d read reports of bad outcomes for ventilated patients.
That Thursday, she started on the ventilator. It worked as hoped, immediately raising her blood-oxygen levels, but it would take 12 days until her lungs could work again on their own. Nina was discharged in early May to Spaulding, joining the stream of COVID-19 patients leaving acute care hospitals for rehab.
A prolonged bout on the breathing machine can have lasting effects on patients. Muscles atrophy from immobility and the brain absorbs the effects of sedating medications. Survivors often have trouble thinking clearly and making decisions, lack the strength to perform routine tasks, and can suffer from depression, anxiety, or post-traumatic stress disorder.
Many of the sickest COVID-19 patients end up on ventilators, and they are likely to experience these syndromes, “but maybe even a little worse,” said Zafonte, the Spaulding vice president. COVID-19 patients tend to need more time on the ventilator — weeks instead of days — putting them at higher risk of aftereffects. And to make matters worse, Zafonte said, COVID-19 triggers intense inflammation that affects multiple organs.
Ed Coletta, who is press secretary for the state Department of Environmental Protection, had read about what can happen after a prolonged stay in intensive care, and it worried him deeply. When Nina woke up from the medication-induced coma, she was confused and hallucinating, as often happens. The room seemed to expand and contract. At one point she thought she was on a sailboat.
But Ed was relieved when Nina recognized her family during a video chat. And within a few days, as the medication wore off, it was clear she had emerged with her mind and her go-get-‘em personality fully intact.
“Personality wise, she’s back to her full self,” said her younger daughter, Gabriela. “We were able to have deep conversations. She was able to tell me what she went through.”
Physically, though, Nina faced big challenges. At first she could barely hold the phone in shaky, weakened hands. She couldn’t stand unassisted, never mind walk. A deep pressure sore on her backside burned and throbbed.
But worst of all, her feet felt like they were gone. From the ankles down, she could feel nothing, not even the delightful spray from a shower. And except for slightly wiggling her right toes, she could not move her feet at will.
“My feet, I don’t know where they are,” she said in a phone call with a reporter, who checked in with her from time to time during her recovery.
A nerve injury was preventing messages from traveling between her brain and her feet. Zafonte likened it to a traffic jam. The blockage may have resulted from prolonged immobility or possibly from the inflammation that often accompanies COVID-19, he said.
Other ventilator survivors have experienced similar injuries, and Zafonte said it’s not clear whether this type of nerve problem is more common in COVID-19 survivors. It’s also unknown whether nerve function can be restored or how long that might take.
At Spaulding, Nina kept to a rigorous schedule of three hours a day of physical and occupational therapy, plus some exercises she did on her own. She practiced showering, dressing, brushing her teeth. “I’ve always been the caregiver,” Nina remarked. “So to have somebody literally help me in and out of the bathroom — it was humbling. It was loving at the same time.”
The hardest part was walking. Putting one foot in front of the other is no simple matter when you can’t feel your feet. Her toes dropped downward; she had to watch them and take small steps.
In the gym, her physical therapist, Lisa Perkins, wrapped her in a harness attached to a track on the ceiling, to steady her. A device on her sneakers lifted her feet parallel to the floor.
Nina kept thinking of the staircase in her 1847 house, which narrows and curves at the top. Somehow, she would need to develop the strength and balance to mount those stairs.
One night in May, Nina dreamed that she was standing on a sea wall, looking down into the deep ocean. She jumped in without hesitation. “It wasn’t scary,” she said. “It was exciting.”
Nina sounded chipper every time she answered phone calls during her stay, at one point declaring herself “just ducky doodles.” But as the conversation progressed, she often got teary.
“I’m up and down,” she admitted during one call in May. “I’m happy that some of the therapists are really tough and they’re really kicking me to go farther and do more.
”But I’m sad that I can’t see my family,” she said, breaking down. Infection control rules during the pandemic barred all visitors. “I just want to hold my husband’s hand. That would make me feel better.”
Her family suffered too. Her daughters Angela, 33, and Gabriela, 27, gathered at the house every day, with their brother, Christopher, 37, joining by FaceTime from Baltimore. “Every day we’d have a powwow as a family, checking in with each other,” Angela said. Sometimes they ended up sobbing.
Nina and her family were reunited in person, though from a great distance, on two occasions when they gathered outside Spaulding and she waved to them from the balcony. And a longtime friend, Josephine DiPietro, who works at Spaulding, stopped by daily with well wishes and items from home.
By late May, some feeling had started to return in her right foot, a propitious sign. Nina could tell when that foot touched the floor and whether it was cold. She couldn’t feel her toes, but she could wiggle them. When Perkins stimulated her nerves with electrodes, she could feel a zing.
And then, in June, the hospital started allowing visitors, one at a time, a maximum of two per day. Nina was nervous about facing her husband after their longest separation. How would she look to him — haggard, lying in bed, her hair going gray? But they embraced and wept, and Ed assured her that he found her beautiful.
Even as Nina’s spirits improved and physical strength grew, a new obstacle arose: Her pressure wound — so painful she practiced deep breathing to cope — required surgery, adding an extra two weeks to her stay.
On June 22, Nina got word that she could go home the next day. By this point, she could walk three times around the floor, with her walker. She had been at Spaulding 47 days.
“I came in here on a stretcher,” Nina said. “Tomorrow, I’m going to walk out.”
And so she did, accompanied by Ed and daughter Angela, wearing a face mask embroidered with a yellow rose in honor of her Texan mother and a tiara that Ed placed in her thick, wavy hair. Wheeled outside amid cheers from the staff, Nina insisted on standing up and walking the few steps to the car.
Nina grew up in East Boston and has lived there most of her life. Since 2002 she’s worked at East Boston High School, where she runs the family center and, with a team, coordinates services for homeless students — sometimes even taking them into her own home.
In the days before COVID-19 got her, she was busy packing food in the school-run food pantry and helping connect families with resources. After Nina was hospitalized, Gabriela could hardly keep up with the phone calls from concerned people all over East Boston.
So Nina was probably the only one who was surprised when so many friends and relatives gathered for her homecoming, holding signs saying, “We love you Nina.” They burst into cheers when, honking, Ed pulled up in their red SUV. Nina rolled down the window, looked around, and put her head down, weeping.
“Ni-na! Ni-na! Ni-na!” they chanted.
Ed parked and brought the walker around as Nina emerged from the car. “I love you all,” she replied, sobbing, with Ed’s hands on her shoulders. “Thank you so much.”
At heart Nina is a dancer. She took dance classes — ballet, jazz, tap, you name it — from childhood through her freshman year of college. Then she graduated to “throwing on a CD and just letting loose in any room that has enough room for me to move around in.” At her 60th birthday party last August, Nina said, her feet were flying the minute the music struck up, and she never sat down.
Now, she looks at her feet each morning and says, “OK guys, today’s the day.”
So far they have not complied. Nina has partial sensation in her right foot but her left continues to ghost her. “I’m trying to concentrate not on what I lost but what I have,” she said on Thursday, nine days after returning home. “I have to stop crying at some point.”
Her walls are festooned with get-well cards. She’s grateful to be alive, grateful for her family’s love. The pressure wound still hasn’t healed, but at last the pain is “next to nothing.” Physical therapists and nurses visit regularly. And though she needs a spotter going up and down the scary curving staircase, she feels stronger every day — and remains hopeful about the future.
Still, Nina has a message for the world: “You don’t want to be me right now. Please, please, wear a mask.”
When Nina dreamed about home while still at Spaulding, she imagined the simplest pleasures: walking into her own living room, going through the kitchen, and out onto the back porch, where she could see her yard abloom with petunias and impatiens.
And now that she’s home, that’s exactly what she does. The other day, she sat on the covered porch with Ed, as heavy rain pounded the roof, such a soothing sound.