63.73 F
New York
June 24, 2022
Long COVID Remains A Mystery. We Followed One Patient’s Struggle To Get Treatment
Science

Long COVID Remains A Mystery. We Followed One Patient’s Struggle To Get Treatment

ByJoanna Connors

Photographs ByJackie Molloy

Published June 1, 2022

• 25 min read

In the eight years before December 2020, Hinda Stockstill’s MyChart medical records show that she visited a doctor just five times: twice for annual exams and three for seasonal allergies.

That pattern changed dramatically during the COVID-19 pandemic. In the 17 and a half months between December 14, 2020, and May 31, 2022, Hinda’s MyChart shows 78 visits to various doctors, nurses, physician assistants, therapists, labs, and emergency rooms. All of them were linked to her case of COVID-19, which persisted as long COVID, a sprawling list of symptoms that includes, most prominently: fatigue, brain fog, insomnia, changes in smell and taste, shortness of breath, palpitations, dizziness, and memory loss. The condition, which can last indefinitely and varies in severity from patient to patient, has confounded and alarmed medical professionals.

This is a story about Hinda’s arduous journey through the medical system to conquer long COVID and reclaim her life. It’s a path that hundreds of thousands, possibly millions, will take, according to the National Institutes of Health, which estimates that up to 30 percent of the more than 83 million Americans who have had COVID-19 will suffer from long COVID. The symptoms, which a report in The Lancet says number 203, often debilitate patients, keeping them in bed and unable to work, go to the gym, see friends, or make meals.

Diagnosis has been particularly frustrating for Hinda and thousands of others because no blood tests, or any other definitive tests, exist for long COVID, leaving medical professionals to diagnose cases and run tests based on symptoms and the very loose CDC definition: “new, returning, or ongoing health problems that people experience after first being infected with the virus that causes COVID-19.”

I met Hinda this past April at the Cleveland Clinic, where she’s enrolled in a program for long COVID patients and had appointments with three specialists. Hinda agreed to let me sit in on the appointments and gave me access to her medical records, hoping others suffering from long COVID would learn from the battle she has had to fight to be understood and diagnosed and finally treated.

It took Hinda months to get that diagnosis. “The first doctor I saw dismissed me and said I had anxiety,” she told me. Many women have experienced the same treatment, I said, not just with long COVID but with many other chronic virus-related conditions, such as chronic fatigue syndrome or lethargy following infection with Epstein-Barr. In the not-too-distant past, they got a diagnosis of “hysteria.”

“Yeah, I felt it was because I’m a woman,” Hinda said. “And maybe because I’m Black.” Overhearing, her mother, Eva Abdullahi, told me, “Her father is Somalian.”

On April 13, 2022, Eva had driven from her home in Dayton to Hinda’s apartment in Cincinnati, and then back north to Cleveland the night before her first day of appointments at the reCOVer Clinic. The next morning, she pushed her once-vibrant 35-year-old daughter in a wheelchair through the ever-growing medical center to her first appointment in the neurology department.

“She used to be so active,” Eva told me. She looked over at Hinda, slumped in the wheelchair. “Her color’s not the same, either. She used to be radiant. Now she looks peaked to me.”

Hinda appeared dejected, slightly annoyed, and just plain tired of dealing with a condition she has come to know so well she can quote statistics from medical journals and rattle off the scientific terms for multiple disorders like a veteran clinician.

Before COVID, she had a full and active life. She has both a B.S. in accounting and an M.B.A. from the University of Dayton, and she loved her job as an office manager for an insurance company. She played basketball and volleyball, volunteered as a Big Sister, went to church, went to the gym to run, lift weights, and take aerobics classes, and spent time playing cards with a group of friends.

COVID-19 changed everything. “I was isolated for a month,” she told me. “I was too sick to go to work. I lost so much. I lost time with my family. I lost friends. One of them still doesn’t believe COVID is real.” Another friend said to her, “You’re always sad. You’re always sick.”

Hinda’s long COVID felt much the same as her acute COVID-19 symptoms: fatigue, brain fog, shortness of breath, sudden rapid heartbeat, headaches, numbness. Others were new. Food smelled rotten, like garbage. She lost weight. She also lost a lot of hair. “It just came out by the handful,” Hinda said, showing me a photo on her phone. “It was scary. I thought, Am I dying?”

Andy Slavitt, who served temporarily as a senior advisor to the Biden administration’s COVID Pandemic Response team, recently warned that long COVID will soon eclipse the impact of acute COVID-19. “COVID may not be remembered primarily for the full hospitals, unpredictable variants, mask and vaccine controversies, or even the massive loss of life,” Slavitt tweeted in April. “It may be thought of primarily as chronic disease affecting tens of millions.”

While long COVID is hard to define and diagnose, addressing it within the traditional medical structure has added more confusion. Many patients, including Hinda, bounced from emergency rooms to internists to specialists, each physician looking at just his or her piece of the picture.

To respond to this new disease, universities and hospitals around the United States have created multidisciplinary clinics to offer patients a centralized hub of clinicians who assess their condition and refer them to appropriate specialists.

Hinda’s mother saw a story about one of them—the Cleveland Clinic’s ReCOVer Clinic—and urged her daughter to check it out. Hinda had her first appointment there on July 14, 2021, seven months after she first contracted COVID-19.

Kristen Englund, an infectious disease specialist and now the director of the ReCOVer clinic, was inspired to launch one of these clinics in August 2020, not long after she had endured a bout of COVID-19. Though she wasn’t hospitalized, her recovery was slow. “I felt like I’d been hit by a Mack truck,” she says. “I’ve never been so fatigued in my life.”

When she returned to work, she saw that long COVID sufferers were calling her infectious disease department, desperate for help. “I quickly realized that there was absolutely nothing that was still infectious about these patients, and nothing we could do for them,” Englund says.

She started looking at how other hospitals were trying to help this rapidly growing group of patients. Mount Sinai, in New York, launched the first-of-its kind post-COVID clinic in May 2020, instituting a model of multi-specialist care and a centralized referral system that other hospitals, including the Cleveland Clinic, would follow. “I realized this was not going to be a one-size-fits-all kind of an approach, and we really needed to have a lot of different specialists available for patients,” Englund says.

The beginningHinda clearly remembers the evening she contracted the virus. It was December 1, 2020, months before vaccines became available. Her boss invited Hinda to her home to wrap Christmas presents for a charity drive.

Five days later, she came down with a bad case of diarrhea and felt exhausted. She called in sick to work and rested in her apartment, where she lives alone.

Two days later, new symptoms appeared: First came shivering, chills, and then a sore throat. Next: congestion, a runny nose, and a dry cough. She spiked a fever of 101 degrees, which triggered an intense headache that lasted four days and did not respond to Tylenol. Her body felt like it was burning all over. Her hands and feet went numb sometimes and felt tingly at others. She had spells of dizziness and was short of breath. She began forgetting words and losing her train of thought. Her heart raced unexpectedly.

By the third day she was off work, Hinda had lost her sense of taste and smell. That same day, her boss called to say she had tested positive for COVID-19 and had unknowingly exposed Hinda.

But when Hinda went to an urgent care clinic for a rapid COVID test, she tested negative. “I was relieved,” she told me. “I thought I had the regular flu, and I’d just go home and deal with it.”

By the 11th day, though, she was much sicker. “I couldn’t breathe, I couldn’t dress myself, and I couldn’t even stand up in the shower,” she said. She drove herself to the ER at a nearby hospital—after first accidentally ramming her car into a wall of her apartment building. “I felt like a 300-pound man was sitting on my chest.”

About a year after the world first learned about COVID-19, tests were still scarce, so the physician assistant at the ER ordered a chest X-ray as an alternate diagnostic tool. It came back clear. Because of contact tracing and Hinda’s symptoms, an ER doctor agreed she probably did have COVID-19. But, he added, since Hinda was otherwise healthy and athletic, she would bounce back. “Go home, rest, drink Gatorade, and take Tylenol,” he said.

Finding doctorsSo Hinda began an odyssey through a medical system that was entirely overwhelmed by the pandemic. One of her best friends did not believe she had COVID-19. Some doctors she saw were dismissive and another told her she just needed rest. Her employer wanted her back to work, but she was on short-term disability by then, and some days she was so tired she couldn’t get out of bed. The most frustrating part was that no one could explain why Hinda got long COVID or tell her how long it would last.

By Christmas Day of 2020, which she spent alone for the first time in her life, Hinda had grown frustrated with her primary care physician. She felt that the doctor was fixated on her negative COVID test rather than her symptoms, and was not providing the support she needed.

She searched for another doctor and got an appointment on January 11, 2021, with Jonathan Buck, a Cincinnati internist. He spent close to an hour with her going over her history and symptoms. “He actually took time and listened to me!” Hinda told me.

Buck noted Hinda’s long COVID symptoms but did not want to rule out chronic fatigue syndrome or underlying fibromyalgia—both of which have symptoms of fatigue, pain, and trouble sleeping, with no known cause—without first running some blood tests.

On a follow-up visit, on January 26, 2021, Buck scheduled 12 separate blood tests. All were negative except one: It showed that Hinda had antibodies for the Epstein-Barr virus, which causes infectious mononucleosis (mono) and which many people, including Hinda, contract without symptoms. It is one of four risk factors for long COVID identified by researchers in a study published in the journal Cell. (The other risk factors are type 2 diabetes, the presence of SARS-CoV-2 RNA in the blood, and specific auto-antibodies that are associated with immune dysfunction and COVID-19 mortality.)

During that follow-up appointment, Buck noted in MyChart that Hinda “is here today trying to get to the bottom of her condition as she is quite frustrated.”

Frustration may have been an understatement for how Hinda felt. She was angry and frightened. On February 15, Hinda saw Buck again. “I said I am desperately in need of your help,” she told me. “I’m still dealing with symptoms. I had terrible joint pain and a burning sensation on my skin, and I couldn’t walk more than 50 feet.”

Buck told Hinda, “I believe you have long COVID. There is no cure, no treatments, but we’re going to do what we can for you.” He enrolled Hinda in physical and occupational therapy, which she continued for six and four months, respectively.

The first physical therapist didn’t work out. The second one looked up long COVID and other post-viral syndromes and adjusted the length and difficulty of the exercises. “I went from walking short distances and dribbling a ball, to walking longer distances, lifting light, small weights, and then rowing.” After six months she had enough strength to run on a treadmill, though only for five minutes.

Many of the occupational therapies were the same as for stroke victims: card games, mind games, word puzzles, and other brain therapies. “My brain just did not function well,” Hinda said. “I had this brain fog where I couldn’t remember my middle name, I had paranoia, I had these mental blocks where I couldn’t remember who I spoke to that day.”

Hinda knew she needed more support—emotional support—and she found it in the spring of 2021 in an online group, Long COVID Support. Through the group’s posts and group chats she’s learned more about long COVID and connected with other people living with it. She usually ends her day with a FaceTime conversation with long COVID friends.

On March 18, 2021, she went back to work, in person. Her boss wanted her on-site so she could oversee orders and other tasks as the office manager. “I went back at 20 hours a week, and I thought I was going to die,” she remembered. “I still had symptoms. I was exhausted. I couldn’t even stand up.”

That’s when her mother told her about the Cleveland Clinic’s ReCOVer Clinic.

Multidisciplinary clinicsThe reCOVer Clinic opened at the end of February 2021, offering a centralized intake, evaluation, and referral system to help guide patients like Hinda, who had been muddling through a maze of doctors and hospitals alone. The clinic gives them a home base and access to Cleveland Clinic physicians in 18 different specialties. So far, 1,800 patients have enrolled. Englund, the medical director, says the demand is so great, prospective patients often wait months for appointments.

Hinda waited four months. On July 14, 2021, her mother drove her to Cleveland, where she met with nurse practitioner Brittany Baloun, the intake coordinator, who reviewed Hinda’s history and symptoms, and ordered 25 tests, including a lot of bloodwork. “They took 17 vials of blood,” Hinda said.

She returned to the Clinic on July 30 for more tests. “I did a lung function capacity test. It came back as normal. I still had chest pains, and they did a chest X-ray and ECG and EKG. All of them came back as normal,” she said.

Baloun scheduled meetings with cardiologists to address Hinda’s chest pain, tachycardia (racing heartbeat), and palpitations; with physicians in functional medicine for her fatigue; and with neurologists for dizziness, tachycardia, and palpitations.

Neurology is proving to be at the center of long COVID, as research shows that the virus may primarily affect the nervous system. “We always knew that viruses can do much to the nervous system,” causing conditions such as chronic fatigue syndrome, says Robert Wilson, a Cleveland Clinic neurologist who sees many of the ReCOVer patients. “When the pandemic started, I knew I was going to be busy as a front-line worker, and then long term.”

Many of the symptoms Hinda and other long COVID patients reported are common in a syndrome known as POTS, or postural orthostatic tachycardia syndrome. POTS is a malfunction of the autonomic nervous system, which controls body functions, such as heart rate, blood pressure, and digestion. People with this condition have trouble regulating these systems, which can result in lightheadedness, dizziness, gut problems, rapid heart rates, and more. The condition isn’t life-threatening, but no cure is known for it. POTS can be managed in most patients with diet, exercise, and medications.

In response, Wilson and his colleagues started a COVID POTS registry to track these patients over time. At a national meeting to discuss long COVID, Wilson says, a survey of the doctors attending revealed that 90 percent of their patients were women who had experienced mild symptoms of COVID. “Women’s bodies have a more pro-inflammatory response and more autoimmune conditions,” Wilson says, explaining that both are triggers for POTS and long COVID.

Hinda, who had devoted many hours to researching long COVID in medical journals online, suspected she had POTS.

Zarmeneh Aly, the neurologist who examined Hinda on the April day when I accompanied her, said her symptoms were “concerning.” The doctor ordered a tilt table test, during which the patient is secured to a table while lying flat. The table is then raised to an upright position, and the heart rate, blood pressure and often blood oxygen and exhaled carbon dioxide levels are measured to see if the change in position causes an abnormal heart rate or whether any other symptoms—dizziness, lightheadedness and so on— worsen. Aly also ordered more blood work and a skin biopsy. 

“This is what I’ve been asking for months,” Hinda said, a note of triumph in her voice. (She had not yet returned for the tests at the time of publication.)

At her next appointment that day, with cardiologist Michael Emery, Hinda got good news. Her heart functions were normal; Emery said he had no concerns. “Initially we were very concerned about COVID affecting the heart, but now data is showing us that it doesn’t appear that it affects the heart at any higher rate than any other virus.” The tachycardia Hinda felt was more likely due to POTS, he said.

The next day we met at the Center for Functional Medicine, a recent addition to the Cleveland Clinic that focuses on dietary changes, supplements, and meditation practices to tame inflammation and the chronic conditions it causes. It operates in collaboration with the Institute for Functional Medicine (IFM), located near Tacoma, Washington, which was instrumental in developing the specialty beginning in 1991.

Hinda had already had a telemedicine appointment in October 2021 with Seema Patel, a functional medicine physician who spent an hour going over all Hinda’s symptoms and her health history extending back to childhood.

Functional medicine practitioners often say that food is medicine, and Patel focused on Hinda’s diet, potential allergies, and vitamin levels. She put her on IFM’s ReNew diet, which the Center for Functional Medicine describes as “a nutritional pathway to health for those who have autoimmune, gastrointestinal, neurological, and other chronic health conditions.”

The diet, which consists of meat, vegetables, low-glycemic fruits and healthy fats, removes foods that can trigger metabolic dysfunction and reduces intake of all sweeteners and processed foods.

Patel knows it’s hard to follow. “A lot of patients find it boring, and the younger they are, the harder it is,” she said. “But the ones who follow it, they’re the ones who do better.”

Patel also prescribed a range of supplements: GI-Revive, for gut healing and heartburn; magnesium glycinate for stress, sleep, and energy; a multivitamin; omega-3 fish oil; Quercetin, an antioxidant and anti-inflammatory, and a probiotic.

During the in-person appointment in April, another functional medicine doctor, Alice Sullivan, reviewed Hinda’s supplements and diet. Hinda told the doctor she had been following the diet, mostly, but had eaten a few of the forbidden foods. Dairy was one of them. “I’m lactose intolerant, but I love cheese too much,” she had told me earlier, as she dug into a cup of macaroni and cheese.

“I’m impressed that you followed so much of the plan,” Sullivan said. She added that she considers diet to be a major factor in recovering from long COVID.

Sullivan, too, gave Hinda good news. “I believe you’re going to recover fully,” she said. “If you get rid of the inflammation, your body is going to reset itself. And you’re still young.”

As Hinda and her mother prepared to drive back to Cincinnati, Hinda felt better than she had in a long time. “I’m feeling hopeful,” she said. “Very hopeful.”

Two weeks later, her optimism persisted. In a MyChart message to Buck, she reported that her visit to the Cleveland Clinic went well. “At 17 months, I am feeling good now. I only deal with migraines/daily headaches and tingling in my hands and feet. The neurologist prescribed amitriptyline and that stopped the headaches and migraines. From there, I am better able to eat now—I don’t have nausea, I am gaining weight back. Appetite is good. I no longer take Ambien, it’s been about 2 months and I’ve been sleeping great on my own!!!”

Still, she couldn’t help worrying that she might get acute COVID-19 again. She wanted assurance that Buck would continue to care for her as her primary physician. “I just don’t want to suffer for weeks on end as I did before,” she wrote to Buck. “And I was hoping that if I ever got it again, we now have better ways to help people get through it.”

Read More

Related posts

This website uses cookies to improve your experience. We'll assume you're ok with this, but you can opt-out if you wish. Accept Read More

Privacy & Cookies Policy