For ‘long-haulers,’ a return to normal remains out of reach

Stephanie Poyant Moran, director of sales operations at her family’s sign business, keeps a close watch over her daughter, Vera Grace Moran. The plucky 5-year-old developed a rare multisystem inflammatory syndrome this winter, a few weeks after recovering from COVID-19.

Denisse Pumagualle, a bilingual producer for Fall River Community Media, gets around without a walker now, but staying on her feet is difficult. She tried cooking breakfast for her family on a recent morning and said she couldn’t finish the task. Fatigue and a creeping pain in her hips forced her to sit down, while her 11-year-old daughter took over.

Together they represent just two of the many so-called “long-haulers” in Greater New Bedford — people who suffer lasting trauma, lingering symptoms and medical complications from their novel coronavirus infections.

While most people recover from COVID-19 within a few weeks, some experience a wide range of health problems that persist for months beyond the illness itself — from headaches and dizziness to chest pain, kidney damage, neurological ailments and shortness of breath, the U.S. Centers for Disease Control and Prevention reports. Others struggle to recuperate from the invasive medical procedures that were used to save their lives.

A rare but serious reaction for children

The prognosis now looks good for Poyant Moran’s young daughter, Vera. But it was frightening when it occurred.

Poyant Moran, who worked as a spokesperson for former New Bedford Mayor Scott W. Lang during the H1N1 pandemic of 2009 and later as a communications specialist for Southcoast Health, was cautious about COVID-19 from the start. She stayed at home  and wore a protective face mask whenever she ventured out. She and her husband, Ross, even shared home-schooling duties for their children when classes shut down in March of 2020. But just after Christmas, Poyant Moran said she developed flu-like symptoms. On New Year’s Eve, she lost her sense of smell.

Family members were tested, and she, her husband, and two of her three daughters came up positive for COVID-19. Poyant Moran said the cases were all mild, especially for her middle daughter, Vera, who only had a bout of gastrointestinal distress. Everyone quarantined through the first two to three weeks of January, and Poyant Moran said she felt relieved when it was over.

But on Feb. 2, Vera said she was tired and didn’t feel well. She was running a low-grade fever, which later spiked above 103. Poyant Moran also noticed that a rash had developed underneath her arm, so she called Vera’s pediatrician at Southcoast Health, Joely Edwards. Vera was tested to rule out a strep infection, and when that test came back negative, Edwards called Children’s Hospital in Boston and spoke to a rheumatologist and cardiologist on the hospital’s COVID team. They said Vera needed to come in immediately.

During the two-plus hours they spent with their local pediatrician, Vera’s condition had progressed rapidly.

“You could see a change in her rash. It was spreading over her body,” Poyant Moran said. “The whites of her eyes turned like a foggy red.” Vera’s feet, hands and face were also beginning to swell, she said.

 An ambulance rushed Vera and her mom to Children’s Hospital, where the girl immediately underwent a battery of tests — blood work, an EKG, chest X-rays and more. Doctors also began treating her for multisystem inflammatory syndrome in children (MIS-C), a fast-moving and potentially deadly complication that can occur with young COVID-19 patients.

MIS-C appears to be linked to an excessive immune response to COVID-19, according to the Mayo Clinic. Children who develop MIS-C can suffer severe inflammation of tissues and organs, including the heart, lungs, blood vessels, kidneys, digestive system, brain, skin and eyes.

Poyant Moran said she and Vera’s doctor recognized the symptoms early, which is vitally important for recovery. Vera spent eight days at Children’s Hospital, receiving multiple treatments, including IVIG (intravenous immunoglobulin), steroids and aspirin to reduce inflammation and to lower the risk of blood clots, which can occur with MIS-C.

After three days, Vera’s fever came down and her rash abated. But she was still undergoing regular testing and treatment to prevent kidney damage and excess fluid in her lungs. By the end of her eight-day stay, she was reading books, coloring and looking much more energetic, Poyant Moran said. Vera came home from the hospital with no kidney damage, and a very small amount of fluid in her lungs, which doctors said would drain as she got more physical exercise — walking and playing.

There were return trips to the hospital and more tests through the spring, including an echocardiogram, EKG and blood work in May. Everything about Vera appears normal for now, Poyant Moran said, noting she doesn’t have to go back for more testing until January of 2022.

But that doesn’t mean the watch will end.

Businesses are now open without restrictions; schools allow children to play outdoors without masks at recess; and both adults and children are feeling comfortable about socializing again, Poyant Moran said. “But children under 12 years old have not been vaccinated.”

Vera is the kind of kid who will rush up and give you a hug and say let’s go play, Poyant Moran said. “She wears a mask, and she knows why.”

As more people get out and mingle, it’s up to parents to watch their children carefully, paying heed to any symptoms that might be related to MIS-C, Poyant Moran said. Even kids who don’t come down with a serious case of COVID-19 can be susceptible to life-threatening conditions that may follow an infection — and catching problems early is critical to a healthy recovery. Seek the advice of your pediatrician or your healthcare specialist if you see anything abnormal, she advised.

Guillain-Barre syndrome and COVID-19

For Pumagualle, the lingering problem is neurological — caused by Guillain-Barre syndrome, a mysterious condition that causes the body’s immune system to attack its own peripheral nervous system. The disorder developed about four weeks after she caught COVID-19.

Pumagualle was taking care of her daughter, who had contracted COVID-19 while staying with a relative in October. Around mid-November, Pumagualle felt like she was coming down with a case of influenza — headaches, nausea, fever, and difficulty breathing. She was diagnosed with COVID-19 and advised to rest at home and drink fluids.

The symptoms persisted, so she and her daughter, Juslyn, both visited the hospital in early December for intravenous fluids and inhalers, she said. By that time, new problems began cropping up. She felt foggy-headed, often forgetting what she was doing in mid-task — leaving the refrigerator door open and walking away, for instance. Then she began losing sensation in her left foot.

Pumagualle noticed that she was walking with an unusually wide stance — spreading her feet apart, “like a tripod,” she said. Her primary-care physician recommended that she visit the local urgent care center, which she did.

After testing, she was told that she had made a full recovery from COVID-19 and her neurological symptoms might be related to anxiety, sparked by worries about her daughter, who had suffered some neurological symptoms as well.

Pumagualle said she pleaded with doctors for more tests, insisting that she couldn’t walk and that her legs were visibly swollen from the knees down.

A neurological exam and spinal tap determined that she was suffering from Guillain-Barre syndrome, Pumagualle said. Her doctor told her that while she had recovered from COVID-19, excess antibodies from her infection had begun to attack her nervous system, starting with her feet.

She was given a 48-hour IVIG, an intravenous immunoglobulin treatment that is often used with GBS patients. The treatment helped.

In just a few days she felt tingling in her legs, as feeling returned. And a persistent stabbing sensation in her left lung had disappeared, allowing her to take long, deep breaths again. There were also side-effects, including nausea, that she had been warned about. The doctor said her body was strong, and that she would likely get back to normal in a few months.

Six months later, the 40-year-old single mom says she is still recuperating, but the process is slow. She goes to physical therapy and knows there is more work to do — especially to regain strength in her left leg. 

Meanwhile, her daughter is back to normal, although she still has some anxiety and brain fog, she said. Pumagualle’s mother moved in to help out.

Pumagualle still can’t drive a car, and she is anxious to get back to work at Bristol Community College, where Fall River Community Media is located. She also serves on the Executive Board for Dream out Loud in New Bedford, and she misses that part of her life.

“There are good days, and there are bad days,” she said. “There are days that I get depressed.”

Doctors now tell her it could take up to a year to fully recover.

Daniel Sousa, a pulmonologist at Southcoast Health, says the hospital group has diagnosed at least two patients who developed Guillain-Barre Syndrome after COVID-19. One was treated elsewhere, and the other received IVIG therapy.

Guillain-Barre is an ascending paralysis that starts in the lower extremities and creeps up, Sousa said. The disorder can be devastating because if it creeps up high enough to hit the diaphragm, “you can end up on a ventilator.”

He noted that numerous studies are underway to examine possible links between autoimmune disorders like Guillain-Barre syndrome and cases of novel coronavirus infection.

Sousa said many who suffer the most critical symptoms from COVID-19 are victims of their own immune response to the virus.

Because the novel coronavirus is new, the body hasn’t seen it before, he explained. And the majority of individuals — about 85 percent — suffer cold-like symptoms or can be asymptomatic, or be sick at home for 14 days and get through it. 

But for those who become critically ill, the immune systems fail to create the appropriate antibody to block the novel coronavirus’ spike protein, which is that part of the virus that embeds into the lung cell. The virus replicates, destroys the cell and repeats the process until it becomes systemic, he said. “So that failure to mount an appropriate antibody leads to havoc.”

When the body can’t find a way to fight the virus, it keeps revving up the immune response, and, “It’s not so much the COVID that kills you, it’s your inherent immunological response — the (cytokine) storm.”

“It’s that response that’s actually causing the damage,” Sousa said. 

Roughly 10 percent of the serious COVID-19 patients who were hospitalized can develop long-term health problems — from strokes to cardiomyopathy to pulmonary fibrosis, he said.

Long-term lung damage for some patients

As a pulmonologist, Sousa treats patients who have survived serious COVID-19 infections and are now suffering from long-term respiratory issues. He could not speak in detail about specific patients due to HIPAA laws that protect personal health information, but he said the condition affects both young and old.

When COVID-19 attacks the lungs, some patients develop a critical lack of oxygen (hypoxia), which can damage the heart, brain, and other vital organs, Sousa explained. To save their lives, doctors use high levels of oxygen, “because without sufficient levels of oxygen, there’s brain dysfunction, cardiac dysfunction, multi-organ system dysfunction,” he said.

Early in the pandemic, the medical community learned that placing patients on a mechanical ventilator could lead to a mortality rate of 70 to 80 percent, so less-invasive procedures that work like sleep apnea CPAP masks were often used. Biphasic Positive Airway Pressure (BPAP) machines deliver oxygen in a less invasive way than intubation, he said. But even with that option, the effect of high-level oxygen over a sustained period can result in “oxygen radical damage” to the lungs, Sousa said. Patients who were hospitalized and received extended high-oxygen treatment for a week or more could suffer long-term pulmonary issues, he said.

“We’re seeing in people as young as in their 30s that survived, did OK, and now they complain of shortness of breath,” he said.

Sousa said three of his patients — elderly women who had perfectly good-looking lungs on pre-COVID CAT scan imaging — now have markedly abnormal lungs after recovering from the virus.

“This is going to be a phenomenon that we’re going to see nationally,” he said. “Those that have been seriously ill and hospitalized with high oxygen, we’re going to see this damage.”

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