San Antonio Express-News: 'Beyond my control': A San Antonio woman's two-year battle with Long COVID
Rosario Neaves had achieved the good life.
She was a vibrant, single woman with a high-profile job, earning more than $230,000 a year. She could buy anything she wanted and traveled overseas, visiting Paris and Amsterdam. She was in great health, someone who enjoyed hiking, bicycling, kayaking and dancing. Her calendar was full.
Then it all collapsed.
The 42-year-old San Antonio woman became severely ill with Long COVID two and a half years ago, early in the pandemic. Since then, she’s made 16 emergency room visits and been hospitalized twice. She’s battled shortness of breath, pulse rates so high she feared a heart attack, an intolerance to heat and profound weakness that some days left her unable to get out of bed.
She resigned from her dream job as communications director for the city of San Jose in California and moved back home to San Antonio. She has been unemployed for the past two years.
Neaves eventually became unable to live alone because she was so sick and has slept on a couch at her sister’s apartment for the past year. She no longer drives a car. Social outings are infrequent. She takes 10 different medications, sees 19 medical specialists and has restricted her diet to about 15 food items.
One of the most devastating consequences of her illness occurred in June 2020 when she suffered a miscarriage. She had learned she was pregnant just two weeks before she lost her baby.
“It’s just been unimaginable,” Neaves said. “I would have never, ever thought that I would ever be in a situation like this that is so beyond my control.”
Long COVID, also known as post-COVID syndrome, is a new disease afflicting millions of Americans who were infected at some point by the coronavirus virus. Nobody knows the exact number, but estimates show more than 18 million to 27.5 million people nationwide suffer from the condition, according to the American Academy of Physical Medicine and Rehabilitation.
The illness can impair many systems in a patient’s body, causing overwhelming fatigue, neurological problems, cognitive difficulties such as brain fog and memory loss, shortness of breath, anxiety, depression and suicidal thoughts. Some studies have found up to 200 symptoms. President Joe Biden’s administration released guidance last year stating that Long COVID can be a disability for some patients.
Long COVID can strike anyone, even those who had mild or asymptomatic COVID cases. It can sicken those who received all recommended vaccines and booster shots. Some patients, like Neaves, are “long haulers” who have battled their symptoms for two-and-a-half years.
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Rosario Neaves, 42, of San Antonio, takes a break from activities with her great nieces and great nephew at a public library to breathe through her inhaler. Neaves has been living with Long COVID for more than two years. She still has trouble breathing and maintaining energy for small trips, such as library visits.
Jessica Phelps
Neaves suffered for 18 months before she received a medical diagnosis. She’s encountered doctors and family members who didn’t believe she was sick. Some friendships she thought she could count on have faded.
She battled hopelessness, isolation and fear, but discovered a vast community of other Long COVID patients online and formed new friendships. She began taking a new medication in March that has brought some relief, though her health and strength haven’t been fully restored.
She’s started looking for an apartment where she can live by herself. She wants to work again. She dreams of a new future.
‘The peak of her life’
Neaves made the most of her time at home, earning a master’s degree in the social sciences with a concentration in sociology from the University of Chicago. She graduates Aug. 19. Her thesis focuses on women 29 to 45 years old who suffered from Long COVID symptoms for at least six months, including some whose symptoms were dismissed by doctors as psychological. She interviewed 15 women for her project.
Her journey has taken her to points so low that she didn’t want to go on living to triumphs that gave her a newfound sense of purpose to educate the world and ease others’ suffering.
But the turmoil she has endured since early 2020 remains with her. She’s been diagnosed with post-traumatic stress disorder.
“When I encountered COVID, I would say I was at the peak of my career, at the peak of my life,” Neaves said. “I worked really, really hard to get to that place. So to go from this peak ... to this pit of my life has just been dramatic in so many ways.”
Long COVID is still somewhat of a mystery. There is no official test to diagnose it. There is no treatment approved by the federal government. There is no cure.
The illness brings misery to those it afflicts. It can end careers and destroy relationships. It can leave people homeless, unable to pay rent or a mortgage. It can make a previously healthy person completely dependent on others for care.
“It’s almost like watching yourself die, but you’re still alive,” said one patient advocate, Emily Taylor, vice president of advocacy and engagement of the Solve ME/CFS Initiative, which includes the Long COVID Alliance.
“I’ve had patients who were on the verge of losing custody of their kids. I’ve had patients who were on the verge of losing their homes. I’ve had patients that have already lost their jobs or were inappropriately fired from their jobs because of their illness,” she said. “Desperation doesn’t even begin to cover it. Desperate is not a big enough word.”
In Taylor’s view, Long COVID seems to hit Type A personalities or high-performing individuals the hardest when it comes to quality of life. That was especially true for Neaves.
Rosario Neaves, 42, of San Antonio, smiles as she walks through a hallway in Moody Theater filled with posters of musicians. She was at the Austin venue to see one of her favorite bands, The Head and the Heart, live in concert earlier this month.
Jessica Phelps
High achiever cut down
Neaves was raised in a family of modest means on San Antonio’s Southeast Side. She graduated from Brackenridge High School in 1997.
She was the first in her family to move away and go to college, which she started at 17 years old. She graduated from Boston University, a private school, in 2001 with a degree in mass communications.
She enjoyed a long career that included jobs in Boston, San Antonio, St. Louis and London before she was hired by the city of San Jose in late 2017. Her previous employers included FleishmanHillard, the city of San Antonio, oil refiner Tesoro and the San Antonio Housing Authority.
Her family saw her as “a rising star, doing big things,” said Neaves’ sister, Tomasita Neaves, 46, of San Antonio. “She was always different, goal-oriented ... (Anything) she sets her mind to, it’s going to get done.”
Landing the San Jose job was a high point for Neaves, one that more than doubled her salary overnight. “That was intended to be the pinnacle of my career,” she said. “And it definitely was. I had been leading up to that for the last 20 years.”
She was not only San Jose’s communications director, but also its emergency public information officer. It was an enormous responsibility that required her to be on the front lines of any public safety or health crisis — such as the COVID-19 pandemic.
Neaves and her staff had already been working on an emergency response plan for COVID-19 when the first cases surfaced in San Jose.
“I remember specifically the day that I got the call that was like ‘It’s coming here — it’s arrived for us,’” Neaves said.
She supervised the city’s first COVID-related press conference in March 2020 to announce that four of San Jose’s firefighting personnel had been infected with the virus.
That briefing was held indoors at the airport. No one wore face masks.
“This was a time when we didn’t know that masking was essential,” Neaves said.
“Looking back at that now, I think ‘Oh my goodness’ — we had no idea. We were probably all being exposed,” she said. “So I believe I could have contracted it there or from any one of the other gatherings that we had related to updating the media on the pandemic.”
Still, Neaves doesn’t know exactly when or where she contracted the virus. She suspects she was asymptomatic She began feeling run down and exhausted in early 2020, around the time the first cases appeared in the United States.
Rosario Neaves enjoyed a full and healthy life before she was sickened by a chronic condition known as Long COVID. The San Antonio woman enjoyed salsa dancing in St. Louis with her friend, Nabil Elhassan, years before the illness sent her life on a detour. (Courtesy) Upper right: Neaves visits a public library with her family. Bottom right: Neaves uses her inhaler after walking through a UT Health San Antonio building for a neurology appointment. Her mother, Sylvia Neaves, sits next to her. (Photos by Jessica Phelps)
By April of that year, her health had deteriorated. She experienced a type of fatigue she’d never felt.
“It felt like no matter how much sleep you get, you’re still not able to get through the day,” Neaves recalled. “And it was just too much ... No amount of coffee or anything like that could combat it.”
She endured shortness of breath and symptoms of a cold or a sinus infection that spring, which she reported to her primary care doctor. The breathing problems felt nothing like the moderate asthma she suffered before the pandemic. Nobody thought it was COVID.
One day in June 2020, after returning from a trip to Chicago, she woke up short of breath and dizzy. She nearly fainted when she climbed out of bed. She went to a hospital, but wasn’t offered a COVID test.
When she was tested more than two weeks later, the results were negative. But Neaves’ troubles weren’t over — they were just beginning.
That same month, Neaves suffered a miscarriage. She was eight weeks into her pregnancy. She believes she lost the baby because of her illness, which was still undiagnosed. The grief and memories still cause her to flinch.
The following month, she woke up one day feeling so weak she feared she would pass out. A strange tingling sensation burned through her thighs — something she had never experienced. An odd rash of white spots appeared on her elbow. She went to an emergency room.
Several more ER visits followed that summer when her heart rate soared to staggeringly high levels for no reason she could discern.
Doctors dismissed Neaves’ symptoms as anxiety or panic attacks. During one ER visit, they offered Ativan, an anti-anxiety medication. They gave her pamphlets explaining how to cope with panic attacks.
She underwent a series of heart tests. The results came back normal.
But her ailments continued. Neaves grew increasingly frustrated with doctors dismissing her concerns.
“I didn’t expect to encounter that,” she said. “I expected to be treated as a whole person, as a professional. I expected to be believed and validated. Instead, I was treated almost like in an inhumane way.
“I just couldn’t figure out, what is the best way to get these people to take me seriously? ... Do I need to dress better when I go to the hospital? Do I need to make sure my hair is done so I look more professional?
“I felt labeled as a woman. I felt labeled especially as a person of color. As somebody who’s sort of diminutive in size, I think you get treated a certain way.”
The disbelief that Long COVID patients encounter from some health care providers is “clearly a problem,” said Congressman Lloyd Doggett, a Democrat whose district includes San Antonio.
Doggett, who chairs a House health subcommittee that has heard testimony on Long COVID, expects the numbers of patients will only increase.
“So often, the worst symptoms are subjective,” he said. “Patients are often questioned significantly about whether their symptoms are real.”
Neaves later followed up with a doctor she met in the ER who suggested she might have “mild COVID” — another term used at the time for the chronic illness. She began to research the condition and became convinced he may be right.
But there was no official diagnosis, no treatment and certainly no cure.
In July 2020, she resigned from her job in San Jose. She had planned to attend graduate school at the University of Chicago that fall. She debated whether to move to Chicago or return home to San Antonio and conduct her studies online.
But with her health failing, she found that there was only one option. She went home.
In September 2020, Neaves started her graduate program. She hoped it would give her a new focus.
“My family especially, they said, ‘We think that you’re overthinking all of this,’” Neaves said of her health crisis. “‘It’s in your head. You need to just stop thinking about this so much and focusing on it. Keep living life.’”
She tried. She dove into her course work. She also began forming a new health care team, finding a primary care physician, cardiologist, allergist and other specialists.
Her episodes of high heart rates, shortness of breath, dizziness and near fainting continued repeatedly for many months. A San Antonio allergist diagnosed her with mast cell activation syndrome, a condition that many Long COVID patients suffer, which can cause breathing problems and anaphylaxis.
In 2021, COVID vaccines became available. Other COVID long-haulers debated online whether the shots helped. She decided to proceed.
But the vaccines made Neaves’ symptoms worse.
She developed a multitude of new food allergies. The list of foods she could safely eat narrowed considerably.
While she meticulously monitored her diet, she couldn’t control the high amounts of pollen and mold in the air that triggered new attacks, rendering her helpless. At some points, her throat would close to where she could barely breathe.
“These episodes of allergic reactions had been brought on by Long COVID and then even exacerbated by the vaccine,” Neaves said. “It seemed to cause this next wave or this relapse of the illness.”
The summer of 2021 was marked by heavy rains. The high mold counts dragged her further down to where she could barely function.
A week of relentless rain arrived. Neaves, living alone in her apartment in downtown San Antonio, was hardly showering because she couldn’t stand. She couldn’t tolerate heat or humidity. She didn’t have the strength to prepare her own meals. She told her mother she didn’t know if she’d survive the week.
It was Neaves’ lowest point. She couldn’t breathe. She felt as if she was drowning. Day after day brought endless physical suffering. Her dreams of a doctoral degree, owning a home, marriage and children were vanishing.
No hope was in sight. No help was coming.
“This is not life,” she recalled thinking. “And no one should have to endure this level of suffering and pain.”
She felt the distance from friends who had once been close and supportive. “Everybody was just kind of turning away from me,” she said. “And I think that it just made everything so much worse.”
Neaves — once a poised, confident, joyous and tenacious woman with big plans, someone eager to tackle any challenge — felt completely defeated, with no fight left to give.
“I remember talking to my sister and just saying, ‘I can’t keep doing this ... And if this is what life is going to be like, I can’t endure this any longer,’” Neaves recalled.
“This was like man versus nature. And nature was winning.”
One day that summer, she was alone in her apartment and found she couldn’t get up. Her body wouldn’t move, though she tried mightily. She called 911. An ambulance took her to Methodist Hospital.
She remained there for almost three weeks.
Rosario Neaves holds the hand of a friend and nervously waits for technicians to add pads to the wraps around her legs so she can continue EECP therapy to help ease her Long COVID symptoms.
Jessica Phelps
Dealing with skeptics
Neaves spent the first 10 days of her hospital stay in the neurological unit. A battery of tests ruled out multiple sclerosis, Guillain-Barré syndrome and other diseases.
Doctors gave her heavy doses of steroids to reduce inflammation, fend off further episodes of paralysis and stop her throat from closing. A pulmonologist helped her manage her breathing problems. She went through physical rehabilitation exercises.
“It was the first time that I finally had gotten the type of health care and attention I think that I had needed over the last year and a half,” Neaves said. “I was finally able to get validation for what was going on.”
Her appearance and condition in the hospital shocked her family, particularly her sister.
“It wasn’t until she went into the hospital that I started to realize ‘Okay, there is something wrong with her,’” Tomasita Neaves recalled. “When I saw her having to get up out of the bed to walk and she could barely drag her legs, I was like, ‘Oh my God — you really are sick. We need to find out what it is.’”
Tomasita was the only family member to apologize for doubting Rosario’s health concerns.
“She was my sister,” Tomasita recalled tearfully. “That’s all it is at the end - ‘You’re my sister, and I’m going to fight for you ... So I have to do what I have to do for you and make sure that you come out of this.’”
After the hospital stay, Rosario could no longer live on her own. She moved into her sister’s two-bedroom apartment, where her sister’s boyfriend and his mother also live. She slept on the couch in the living room and kept her belongings in bags in corners of the apartment.
To this day, she doesn’t know what the other skeptics in her family think.
“I reached a point where it didn’t matter anymore,” Neaves said. “I stopped seeking their validation. When I started seeking the support of other long-haulers and of other medical professionals globally online, that did confirm what I was experiencing.”
The public has more sympathy for cancer patients than Long COVID patients due to a lack of understanding and because COVID-19 has become so politicized, said Dr. Monica Verduzco-Gutierrez, professor and chair of UT Health San Antonio’s Department of Rehabilitation Medicine.
Verduzco-Gutierrez launched two post-COVID recovery clinics in San Antonio two years ago, one at UT Health and the other at University Health. She oversees both clinics. She also is one of Neaves’ doctors.
The lack of a medical test to quickly diagnose Long COVID also contributes to people’s doubts, she said.
“Sometimes people think, ‘Oh, it’s not real, it’s just mild, you just had a cold. You’re just depressed. You’re just anxious,’” Verduzco-Gutierrez said. “Long COVID — it’s real. This is a long-term public health issue that we’re going to be dealing with.”
The illness is so new that many physicians aren’t yet aware of it or aren’t well educated on how to recognize the signs, she said. Much of the research on Long COVID is still in progress.
After a long wait, Neaves became a patient at UT Health San Antonio’s Post-COVID-19 Recovery Clinic last summer.
Verduzco-Gutierrez officially diagnosed her with Long COVID; mast cell activation syndrome; and orthostatic intolerance — specifically, hyperadrenergic postural orthostatic tachycardia syndrome. The latter diagnosis is one form of a disorder commonly known as POTS, which causes low blood pressure, lightheaded sensations, a fast heart rate and sometimes fainting when a patient stands upright. POTS can show up in patients after viral infections, such as COVID-19.
The doctor also diagnosed Neaves with PTSD.
Verduzco-Gutierrez described Neaves’ overall case as severe. “It is 100 percent life changing,” she said.
For Neaves, accepting the illness and surrendering her role as the most successful family member able to provide for any financial need has been difficult.
She is calling on the federal government to do more to help Long COVID patients suffering through similar ordeals.
“We need fast and quality research about what’s going on with this disease,” Neaves said. “We do need to try aggressively to find a cure and treatment options. Because people cannot wait any longer.”
Neaves began to feel some relief in March when she started a new medication, a microdose of naltrexone. In small doses, the drug sometimes eases Long COVID patients’ inflammation and calms their immune systems, Verduzco-Gutierrez said.
Since then, Neaves has slowly rejoined the world, though her symptoms haven’t vanished entirely. She’s gone outside for short walks on days when the mold count wasn’t so high. She attended her family’s Easter celebration. She visited a shopping mall several times. She went to Austin to see one of her favorite bands, The Head and the Heart, in concert earlier this month.
One night, she went to The Cove with a friend and sat outside listening to live music. “I just reveled in every moment,” she said.
“It’s been wonderful. It makes me really happy. Just being outside and being able to see the stars and the clouds and the moon and flowers and birds — you know, I’ve just really missed life and nature,” Neaves said, her voice breaking with emotion.
Throughout this summer, she worked steadily on her thesis, for which she received an A. Her preceptor described her work as “a remarkable academic feat.” Neaves will receive her master’s degree from the University of Chicago this month.
“It is particularly impressive given the fact that Rosario herself was infected with COVID and has been dealing with the impact of ‘Long COVID,’ yet was able to stick with her thesis and successfully complete it and the (master of arts) program,” preceptor Julius L. Jones wrote in an Aug. 10 evaluation of Neaves’ work. “The final result of all of that hard work is an excellent thesis.”
Neaves’ family plans to throw her a party to celebrate her achievement.
Her completion of a graduate studies program during her illness shows her tenacity, others said.
It’s “nothing short of amazing to go through all this and still be able to continue and work on her master’s degree,” Verduzco-Gutierrez said.
“It’s incredible,” said Neaves’ niece, Jasmine Cerda, 28, of San Antonio.
Neaves has started to feel hopeful. She would like to find a job that allows her to work from home. She applied for disability benefits last month, but hopes that won’t stop her from pursuing another career.
“What I would like to do is be able to progress in my recovery to be well enough to work,” she said. “I hope that I have earned enough in my reputation to show that I am still going to be a skilled worker. I am not cognitively impaired, but I do have some physical challenges.”
Neaves has accepted that her chronic illness could shorten her lifespan, perhaps significantly. It’s also possible she could fully recover, she said.
She’s not sure if she will have children, but is still evaluating whether she’ll pursue a doctoral degree. She wants to get married and someday buy a house to call her own.
“I’m at a point where I now have a chance to have a life again,” she said. “I don’t think I’ll ever be that exact person that I was before.”
“I’m trying to do whatever I can to ensure that I do have a quality of life ... I want to be in one place and just be at peace.”