Post by Nadica (She/Her) on Nov 10, 2024 2:54:11 GMT
‘We just want to be heard’: Long COVID patients still feel invisible - Published Nov 9, 2024
By Adam Piore
One of the most difficult aspects of having long COVID, said Henry Silver, 26, is his inability to convey to his family and friends just how much the illness has changed his life.
How hard it was, for instance, to push through the crushing fatigue and return to work last February. How devastating it felt to end up, as a consequence, in the emergency room with a fever of 107, a temperature so high it prompted the hospital staff to institute emergency protocols reserved for patients believed to be suffering from septic shock. Or what it’s like, for that matter, to be 26 — in the prime of your life — and trapped in a formally athletic body that is now so fragile, exhausted, and weak that the only way you can manage an interview with a newspaper reporter is to do it while lying in bed.
“I try to do odd jobs just to keep myself from going completely insane from the isolation and the gaslighting that I get from a lot of people,” said Silver, a former Arlington resident who now lives in Virginia Beach and recently returned to visit Brigham and Women’s Hospital for care. “But at this point, I have to spend more than half of the daytime in bed. I can’t really do much anymore.”
Silver was one of more than 75 Boston Globe readers who reached out to share their experiences after reading a front-page story profiling a handful of doctors, including at the Brigham, who are using experimental treatments to help patients suffering from the little understood disease. Long COVID afflicts an estimated 7 percent of the population, or close to 18 million Americans.
Some readers wanted to pass on lessons they’d learned through trial and error that have helped manage their symptoms. Others wanted more information about some of the medications mentioned by doctors. But most reached out simply because they feel alone and forgotten.
“I responded because I am not heard, and this was one opportunity,” explained Rebecca Kramer of Berkshire, Vt., who burst into tears when phoned by a reporter who was willing to listen to her recount her experiences — how symptoms that included severe brain fog, crippling vertigo, and emotional dysregulation contributed to the unraveling of her marriage and led to the loss of a longtime job at Harvard Medical School. How for the longest time nobody could tell her what was wrong, and no one believed her.
Chronic illness can make you feel lonely. That’s especially true for long COVID, a wholly new disease with a set of symptoms that are so heterogenous, it took a year for some doctors to even acknowledge it was real.
“Primarily my patients feel left out,” said Dr. Ziyad Al-Aly, a leading long COVID researcher who runs a long COVID clinic at the VA St. Louis Health Care System. “All of us experienced this pandemic. But the White House says the public health emergency is behind us. Now they get shuttled between doctors, or told it’s all in their head. And as a result, they feel the world has moved on and left them behind. "
Scott Sayman, 43, a cybersecurity expert, has been so debilitated by his symptoms he left his condo in Boston last October and moved in with his parents in Needham. He reached out to the Globe because it took him months to realize what was wrong with him, and he wants to raise awareness to help others avoid a similar nightmare.
“When I first went to a doctor, I sounded crazy,” he said. “‘He’s like, ‘What’s wrong?’ I’m like, ‘I don’t know.’ And they’re like, ‘where’s the pain?’ I’m like, ‘everywhere.’ You just don’t know what’s happening to you. No one else understands, either. I thought I had multiple sclerosis and Parkinson’s at the same time. It took me at least half a year to even realize that this was probably [long] COVID.”
According to its official definition, long COVID occurs after a COVID-19 infection, lasts for at least three months, affects one or more organ systems, and includes hundreds of possible symptoms and diagnosable conditions, including crushing fatigue, pain, and a racing heart rate.
Deborah Rogers, 53, has spent more than $20,000 a year on a wide array of experimental treatments, blowing through her savings and retirement accounts and relying on the generosity of her friends, who set up a GoFundMe drive to pay for some of them.
Emergency room doctors diagnosed the Belmont resident with COVID pneumonia in late 2020. Testing in the clinic of Dr. David M. Systrom, the physician at Brigham and Women’s Hospital profiled in the Globe story, she said, later revealed the disease had damaged her lungs, heart, and blood vessels and compromised her body’s ability to circulate oxygen. He put her on a medication that helped — without it, she said, she gets dizzy and feels she can’t catch a breath. But that medication, one of the few that is covered by her health insurance, did not solve the problem.
Other treatments she has tried include hyperbaric oxygen therapy, which requires her to inhale pure oxygen in a pressurized chamber in the hopes of increasing the amount of oxygen able to reach her body’s tissues, and IV infusions of mesenchymal stem cells harvested from umbilical cords, to reduce inflammation.
“There are things that can help — maybe not cure, but help,” she said. “I’m tired still, and I have trouble breathing still. But I’m so much better. I have so much more energy. I can run very, very slowly now for six minutes. That’s huge. I was bedridden for five months, and after that I could only walk for two minutes without my heart rate skyrocketing to 180. So I just keep researching and trying to find new things.”
Betsy Lambert, a Northbridge resident, contacted the Globe because she wanted to share what she learned with others, so they don’t suffer as much as she did. Lambert, 66, a public school teacher who taught middle-schoolers in the Mendon-Upton Regional School District, got sick on Jan. 15, 2022. Months after testing negative, short walks left her gasping for air, and she developed trouble regulating her body temperature. Exposure to heat, even a short walk in 80 degree weather, left her with crippling digestive issues that lasted weeks. But over time she has made discoveries by trial and error. Avoiding gluten helps. Ice wraps on her belly, she discovered, can settle everything down. She can exercise in a swimming pool when the water is cool. She surprised herself recently by swimming half a mile at the local lap pool.
“I feel great, and my body does fine,” she said. “It’s like I’m a different person. I experience a little bit of breathlessness, but if I roll over and swim on my back, I can ease that.”
She added: “I want to share what I’ve learned. There’s so little guidance on how to get better. The more knowledge that is out there, the better chances of identifying patterns and finding treatment and finding solutions.”
By Adam Piore
One of the most difficult aspects of having long COVID, said Henry Silver, 26, is his inability to convey to his family and friends just how much the illness has changed his life.
How hard it was, for instance, to push through the crushing fatigue and return to work last February. How devastating it felt to end up, as a consequence, in the emergency room with a fever of 107, a temperature so high it prompted the hospital staff to institute emergency protocols reserved for patients believed to be suffering from septic shock. Or what it’s like, for that matter, to be 26 — in the prime of your life — and trapped in a formally athletic body that is now so fragile, exhausted, and weak that the only way you can manage an interview with a newspaper reporter is to do it while lying in bed.
“I try to do odd jobs just to keep myself from going completely insane from the isolation and the gaslighting that I get from a lot of people,” said Silver, a former Arlington resident who now lives in Virginia Beach and recently returned to visit Brigham and Women’s Hospital for care. “But at this point, I have to spend more than half of the daytime in bed. I can’t really do much anymore.”
Silver was one of more than 75 Boston Globe readers who reached out to share their experiences after reading a front-page story profiling a handful of doctors, including at the Brigham, who are using experimental treatments to help patients suffering from the little understood disease. Long COVID afflicts an estimated 7 percent of the population, or close to 18 million Americans.
Some readers wanted to pass on lessons they’d learned through trial and error that have helped manage their symptoms. Others wanted more information about some of the medications mentioned by doctors. But most reached out simply because they feel alone and forgotten.
“I responded because I am not heard, and this was one opportunity,” explained Rebecca Kramer of Berkshire, Vt., who burst into tears when phoned by a reporter who was willing to listen to her recount her experiences — how symptoms that included severe brain fog, crippling vertigo, and emotional dysregulation contributed to the unraveling of her marriage and led to the loss of a longtime job at Harvard Medical School. How for the longest time nobody could tell her what was wrong, and no one believed her.
Chronic illness can make you feel lonely. That’s especially true for long COVID, a wholly new disease with a set of symptoms that are so heterogenous, it took a year for some doctors to even acknowledge it was real.
“Primarily my patients feel left out,” said Dr. Ziyad Al-Aly, a leading long COVID researcher who runs a long COVID clinic at the VA St. Louis Health Care System. “All of us experienced this pandemic. But the White House says the public health emergency is behind us. Now they get shuttled between doctors, or told it’s all in their head. And as a result, they feel the world has moved on and left them behind. "
Scott Sayman, 43, a cybersecurity expert, has been so debilitated by his symptoms he left his condo in Boston last October and moved in with his parents in Needham. He reached out to the Globe because it took him months to realize what was wrong with him, and he wants to raise awareness to help others avoid a similar nightmare.
“When I first went to a doctor, I sounded crazy,” he said. “‘He’s like, ‘What’s wrong?’ I’m like, ‘I don’t know.’ And they’re like, ‘where’s the pain?’ I’m like, ‘everywhere.’ You just don’t know what’s happening to you. No one else understands, either. I thought I had multiple sclerosis and Parkinson’s at the same time. It took me at least half a year to even realize that this was probably [long] COVID.”
According to its official definition, long COVID occurs after a COVID-19 infection, lasts for at least three months, affects one or more organ systems, and includes hundreds of possible symptoms and diagnosable conditions, including crushing fatigue, pain, and a racing heart rate.
Deborah Rogers, 53, has spent more than $20,000 a year on a wide array of experimental treatments, blowing through her savings and retirement accounts and relying on the generosity of her friends, who set up a GoFundMe drive to pay for some of them.
Emergency room doctors diagnosed the Belmont resident with COVID pneumonia in late 2020. Testing in the clinic of Dr. David M. Systrom, the physician at Brigham and Women’s Hospital profiled in the Globe story, she said, later revealed the disease had damaged her lungs, heart, and blood vessels and compromised her body’s ability to circulate oxygen. He put her on a medication that helped — without it, she said, she gets dizzy and feels she can’t catch a breath. But that medication, one of the few that is covered by her health insurance, did not solve the problem.
Other treatments she has tried include hyperbaric oxygen therapy, which requires her to inhale pure oxygen in a pressurized chamber in the hopes of increasing the amount of oxygen able to reach her body’s tissues, and IV infusions of mesenchymal stem cells harvested from umbilical cords, to reduce inflammation.
“There are things that can help — maybe not cure, but help,” she said. “I’m tired still, and I have trouble breathing still. But I’m so much better. I have so much more energy. I can run very, very slowly now for six minutes. That’s huge. I was bedridden for five months, and after that I could only walk for two minutes without my heart rate skyrocketing to 180. So I just keep researching and trying to find new things.”
Betsy Lambert, a Northbridge resident, contacted the Globe because she wanted to share what she learned with others, so they don’t suffer as much as she did. Lambert, 66, a public school teacher who taught middle-schoolers in the Mendon-Upton Regional School District, got sick on Jan. 15, 2022. Months after testing negative, short walks left her gasping for air, and she developed trouble regulating her body temperature. Exposure to heat, even a short walk in 80 degree weather, left her with crippling digestive issues that lasted weeks. But over time she has made discoveries by trial and error. Avoiding gluten helps. Ice wraps on her belly, she discovered, can settle everything down. She can exercise in a swimming pool when the water is cool. She surprised herself recently by swimming half a mile at the local lap pool.
“I feel great, and my body does fine,” she said. “It’s like I’m a different person. I experience a little bit of breathlessness, but if I roll over and swim on my back, I can ease that.”
She added: “I want to share what I’ve learned. There’s so little guidance on how to get better. The more knowledge that is out there, the better chances of identifying patterns and finding treatment and finding solutions.”