Transcript for Nearly a year later, COVID-19 survivors still suffering from lasting symptoms
Here's ABC's janai Norman. Reporter: Shayna is one of the survivors, sick for weeks after contracting covid last March, but thought she was turning the corner by may. All of a sudden, later into June, early July, I just had a slew of new symptoms. Severe muscle pain to the point that some days I didn't feel that I could walk, my legs hurt so bad. Reporter: The once fun-loving 26-year-old found herself here months after her initial diagnosis at the mt. Sinai center for post covid care in New York City, undergoing tests and treatment for persistent covid symptoms. I felt like no one was taking me seriously before, and because there was no founded, historical, medical evidence of covid long haul, I didn't feel like I ever had a voice that people would listen to. So for you, what does a good day look like? Not having to nap. Taking a walk down the block without needing to recover afterwards. It's tiny victories for me at this point. Reporter: Shayna is one of a growing number of people suffering from acute post covid syndrome. They're being called long haulers, people still experiencing debilitating symptoms long after having covid. In the U.S., over 25 million people, 1 in every 13 Americans, has tested positive for covid-19. Studies now estimating that about 10% of those patients have experienced long-term symptoms. It's impossible for me to go through and name every different system that can be affected, and patients can still be experiencing issues with. Fatigue, headaches, cognitive dysfunction, exercise intolerance, shortness of breath, feelings of temperature irregularities. Reporter: The virus and its lingering effects, indiscriminate. There is times where I felt like I was going to die. Reporter: From a 28-year-old soccer coach in Connecticut unable to get out of bed. Dizziness, pure dizziness for six or seven months. Reporter: 13-year-old Maggie Flanery. She contracted the virus last spring along with the rest of her family. Her parents and two brothers quickly recovered, but Maggie is still dealing with symptoms. Very lightheaded. My appetite has definitely decreased. Yeah, and her chest. My chest pain is always there. And I have trouble taking a deep breath. Reporter: In cartersville, Georgia, Sean Evans is still feeling the pain triggered by a positive covid-19 diagnosis. How do you feel today? I'm okay. I feel a lot better than but yeah, I feel okay. Yesterday was tough? Yeah, I had dialysis yesterday. Those days are usually a little bit harder. Reporter: Sean says the virus not only attacked his lungs, but also his kidneys. Dialysis is really hard on your body. And one of the worst things is muscle cramps. And it's something I've never felt before. Sometimes they get so bad to where it's really painful. Covid, it's like playing Russian roulette. Because you never know if it's just going to be mild symptoms or if you're going to end up on a respirator. Reporter: It was early March when Shaun and Sarah were in the midst of planning her summer wedding. Dreams of walking down the aisle postponed after the 40-year-old father of two began experiencing the telltale signs of covid. It got so bad to where I couldn't even walk. I had all kinds of coughing, lost my sense of taste, smell. Reporter: For a week he ignored the symptoms, but knowing he suffered from high blood pressure and diabetes, Shaun finally rushed to the emergency room. Once I went in the hospital, they diagnosed me with pneumonia, the flu, covid, and the main thing, you know, was my kidneys. Kidney failure. It shut my kidneys down completely. You feel like what you're dealing with today is still tied, all of it, back to when you got covid last year? Oh, yeah. Yeah. This is a little more of the process of getting hooked up to dialysis. Reporter: Almost a year later, his life upended and forever changed. He receives dialysis three times a week. Each exhausting session four hours long. Shaun is now also awaiting a kidney transplant. I won't be the same. I mean, you know, even once I get a kidney, even with a transplant, they only last about, what, 15 to 20 years? If someone were to donate a live kidney. Play those math numbers. What do we do when you're 60? I'll be looking for another kidney, or going back on dialysis again. Reporter: One medical journal citing approximately 40% of covid-19 patients reported temporary kidney damage. And while data is sparse and widely varies, another study reporting recovery rate is high, reporting 80% of survivors fully regained kidney function. The full scope of the virus' long-term effects remains unknown. For people like Diana Behrendt -- Taking medications on a daily basis? No. Reporter: She believes part of unraveling the mystery lies in making sure we have accurate and up-to-date data Behrendt fell victim to the virus in early March at a time when covid was still incredibly new. I just knew it, even though the first person in all of new York City had only been diagnosed 12 days earlier. I knew that this was it. Hi, it's Friday -- Reporter: Realizing the lack of available information -- Hi, everyone -- Reporter: Behrendt started posting video diaries of her experience to educate others as she quarantined. The road to recovery is not necessarily a straight line. It's kind of like, one step forward, one step back. Reporter: Encouraged by the following she gained, Behrendt decided to launch "Survivor corps," a nonprofit dedicating to crowd sourcing information from its members. No data has been collected on the vast majority of patients like me who had what I call the tylenol and Gatorade variety of covid. What that meant is people needed this group to reach out to one another, to share information, and as a result we ended up sitting on the largest data set on nonhospitalized patients in the world. Reporter: Barrent hopes the data her organization provides will help other covid long haulers. We are designing what we think is best practices to create a foundation for a pathway to recovery for what a post-covid care center should look like. Ba works what doesn't work. Reporter: Despite the growing number of people struggling with long-term effects, there are still 19 states without post-covid care centers. The health care burden that we're going to face because of individuals that are requiring so much care with this condition is enormous. Reporter: Dr. Dana Mccarthy is a rehab physician at mt. Sinai in New York. She's been treating patients at the mt. Sinai center for post-covid care, the largest of its kind in the country, while experiencing resaidial effects herself. Every time I attempt to try to exercise, I get crushing fatigue and very severe headaches. So although I have those issues at present, there are many who are suffering much worse. When you first started seeing patients coming to you with these sort of symptoms, were they second guessing themselves and having anxiety about whether what they were feeling was real and whether it was connected to covid? 100%. At the beginning, you know, we were still in the height of the epidemic, pandemic in New York, and people were still being hospitalized. Those who weren't were left to their own devices, on the outside, not having access to care. When symptoms were prolonged, and they were having workups and things would come back negative, they'd be sent home. Their primaries didn't know what to do with it. It became a rhetoric of, it's all in your head, unfortunately. Reporter: Despite the initial difficulty some had, centers like mt. Sinai and others like it have been life savers for long haulers. And the patients that you're seeing, are they getting better? They are, yeah. It's just very slow. Extremely slow. And the problem is, people trying to understand what it takes for them to get better. It's one, hearing it. Two, processing. Then committing to actually having to change your lifestyle. Reporter: For Shaun and wife Sarah, life has been full of changes, including last summer when the couple made good on their promise to one another and got married, a silver lining for a family with a renewed appreciation for life and each moment spent together. Every second, you know, she has to put up with me every day, but you know, it means a lot more. You know. Getting to be with the people you love. Because you're not promised tomorrow. You know? When something like that does happen to you, you really realize what they mean to you. You know, you don't want them to doubt how much you truly care
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