Hi everyone. I'm Katie Couric, and this is next question. I think in the back of my mind, I always knew I hadn't fully recovered. There have been symptoms that I had in the beginning that have never gone away, And now that it's been over a year, I look back and I started sort of see these patterns. No one was talking about stuff like that, so it didn't seem like it was COVID related at all. Honestly, I kept very copious notes because I was afraid and I wanted help, and they assured me that nothing was wrong. It's not just a handful of symptoms. We're talking it out. We're talking about it messes up your entire body, Okay, symptoms, nausea, headache, head It feels like sometimes there's twenty rubber bands, tight rubber bands around my skull at any time. Feeling of water dripping on leg sore muscles, fatigue from marathons. In my life now it's kind of like walking the dog around the block is like a big ask having struggles some days walking from my living room so to the hallway restaurant, I couldn't even think without becoming very tired. I felt like I have been drugged, honestly, gas, ro intestinal issues, hives, lack of ability to concentrate, chicken skin, memory lapses, white lost hearing for a couple of months, tingling on back, soreness, and back. I've experienced tendus tenitus, and that's like a ring in your ears, ringing in my ears. It was more like a screeching. It was more like a like a storm siren mixed with the static from TV's back in the nineties. If you were to put your hand on a train track and if you could sense that, just that feeling, and then have that run through your entire body. It feels like if my spine was like a hollow metal pole and someone took a metal baseball bat and wept it like that zlink, that reverberating metal sound. That's what the pain feels like in my spine. One day, I was actually screaming. I was like, my feet are on fire and I'm screaming. Clumps of my hair were falling out, random raising, insomnia, hypersomnia, where to go, spasms, h pain, vision issues, cold extremities, temperature regulation, confusion, brain fog, comprehension. I can't stand the name brain fog. I think it's putting it very mildly. It's not just forgetfulness. For all intents and purposes, I have dementia. I don't know what's going to be gone next. I have forgotten my phone number, I have forgotten my age. I have not been able to figure out where I live. I'd spent a long time thinking, Okay, this is just in xiety. After all, that's what the doctors keep telling me, that's what the providers keep telling me. So let's buckle down work. We've got bills. Tokay. It just never gets better. It just it just never gets better. Nothing ever changes. It's like ground on set, and it has changed my life. It has turned it upside down. This is a disability. Blong COVID is a disability. We're trying to find, not a sense of normalcy, but we're trying to find ways to manage our new lives, our new bodies. You need to take some time to grieve the life that you thought you were going to live. And I can't verbally express how absolutely soul crushing all of this was to experience. The voices you just heard are from people suffering from long COVID, people who generously shared their stories with us. My name is Janine Hayes, Jack Guest, Lisa Fisher, deep as saying, Shamir L. Smith, Rebecca Hogan, and I have been experiencing I've been living with and all of us are living with long long COVID, long post acute COVID CENTRUMP. Long COVID goes by a lot of different names, long haul COVID, post COVID nineteen or the more formal pasque post acute sequel I of stars COVID two. Even though COVID nineteen has been with us for more than two years, infecting more than eighty million Americans and killing almost one million people in this country alone, long COVID remains a mystery, But what is becoming increasingly clear is is that an alarming number of people are suffering from it, and it's greater impact on individuals, the health system, the labor force, and the economy can no longer be ignored. I believe this long COVID will be sort of a parallel pandemic of people with disabilities and need for a lot of medical attention. Who's going to have a hard time getting those things today? Our next question understanding long COVID, what it is what it can do to the body who's affected, and how it's up ending countless lives. My name is Kikasaki. I'm a professor of immunobiology at the Yale University School of Medicine. My name is Harling croum Holtz. I'm a cardiologist at Yale University, and I'm the director of the Yale Center for Outcomes Research and Evaluation. It's an interesting question how I got involved in long COVID. I I'm a cardiologist, so it's not where I would naturally be. But in the time of the pandemic, all of us with skills and researched and with interest in trying to make a contribution came together and applied ourselves at first to the cute phases of the pandemic, and then over time I began to see that that there was a very important area here that was largely neglected. That was this this long tale of COVID people who were suffering after having an episode of COVID, and it never seemed to end, that it went on for for quite a long time and caused quite a lot of disability, And so I was I was drawn to do it. I had been working with the patient groups, and they had been raising issues and I've been listening, and I had the great fortune to start working with the Kiko Iwasaki, world renowned immunologists, and we began to think together how we might be able to address some of these questions. Let's start with the basics. What is long COVID? How is it being defined? Long COVID describes a state of a person with lingering symptoms OFF or you've gotten acute phase of COVID, either severe, moderate, or mild disease. In some cases, a symptomatic COVID can turn into long COVID, and it's essentially people suffering from long term symptoms for at least four weeks after the infection um UH. And that's the CDC guideline and the w h O guideline is similar, but it's slightly different in saying that within the first three months of COVID you basically suffer from long term symptoms as lasting over two months. But in both cases the definition includes UH longevity of the disease as well as what happens after the acute phase of the COVID. While long COVID feels new, it's actually not the first virus that's caused lingering symptoms in some people, the bowl of virus, the original stars virus, epstein bar virus. These are all known to trigger long term symptoms in some survivors. Even flu can cause long flu. However, with the COVID, we are seeing, you know, millions of people infected at once and seeing large proportion of these people still having um long COVID afterwards. And so this really has shifted the way we think about acute viral infections in that there's this huge possibility of causing debilitating disease even after so called recovery from an acute infection. You've already heard some of the symptoms associated with long COVID, but the sheer number of those symptoms, more than two hundred, is astounding. There is a great diversity of symptoms that people are manifesting from this long COVID, and and it's hard to say whether one is more important than the other because it depends on the individual. And so we're hearing a lot about rainfall, we're hearing a lot about fatigue, but we're also hearing a lot about other things that that are sort of we wouldn't really associate with with a post viral syndrome. I mean ringing in the ears. Dentatis is something we hear about. We hear about gastro intestinal issues. We are about changes in menstrual periods. We hear about um the tingling in the vibrations, we hear about the tremors, muscular skeletal stuff. We hear a lot of neurologic issues. And I've had so many people say to me, is there anyone else like me? You know, people are feeling this great sense of isolation. They're feeling scared and wondering if they're the only ones in the world who are experiencing this, because when they go in to see it a healthcare professional, maybe they're getting a reaction like wow, I've never seen this before, and they're wondering, am I alone in this? And then that's what makes them wonder maybe it's in my head. And yet when we start seeing that there are many people who haven't never met each other but are exhibiting the exact same thing, that's making us think maybe maybe you're not alone. You know. In fact, we say that more certainly, you know you're not alone. By some estimates, long COVID has pushed as many as one point six million workers out of the labor force, and we still don't have a clear idea just how many people are suffering. One study released by the Journal of the American Medical Association late last year suggests that at least half of people who survived COVID nineteen face linkering symptoms, and the range of experiences is all over the map. Some people are so severely affected that they cannot operate normally and that they cannot return to work. Some people are bit bound. Others have multiple symptoms but they are still able to go to work, um possibly not the same extent that they were doing before. And others have just a limited number of symptoms but they're lingering for extended time. Pierre, You, so the severity differs dramatically between people. Researchers have started to unlock a few clues about long COVID, like white affects some people but not others. So there are at least two, if not for, different hypotheses that explain long COVID. One of the hypothesis is that there may be persistent virus or remnants of virus such as protein and urnate from the virus that lingers in these patients, and when those things are not cleared properly, then you would develop chronic inflammation as a result, and that could be driving the long COVID disease. The second hypothesis is autoimmune disease. That an acute viral infection like source covid too could trigger autoimmune disease in people. And autoimmune disease essentially means that your own immune system starts attacking your own proteins and molecules UM, and when that happens, it's very difficult to stop ALLO I mean reactivation activation of these cells, and therefore that could be driving long term consequences UM. There are other hypotheses such as reactivation of latent viruses that we all have in our body that's usually dormant, but as a result of covid UH, those viruses reactivate and cause disease, such as um epstein bar virus or other herpes virus family members. UM. There's also a possibility that your gut microbiome, the bacteria that live in the gut or in other areas, may also shift as a result of the COVID and that could trigger some inflammation as well. And then there's also this UH tissue damage, especially from people who have had severe COVID, that there is significant damage that occur in various tissues, including the lung and other places that may be very difficult to repair, and that's causing a long COVID. So there are many different hypotheses UM, all of which currently have UM emerging supporting evidence. For the good news is that understanding what causes long COVID will eventually help treat it. The treatment of different symptoms for a long COVID is a big challenge um first of all, because there are so many symptoms that people report at the same time, so the treatment would differ dramatically depending on what the person is suffering from. And that's why we are really trying to understand the underlying mechanism of disease so we can properly first of all, classify the patients into who's suffering from what causes and then we can establish a clinical trial to test different drugs that may work against that particular cause sitive agent. I think the key thing is now is just to admit that one day ignorance to that there's a wide variety of symptoms. Some people have taken this wide variety of symptoms and used it to suggest there is no common long COVID that this is this is evans. I take it as evidence that maybe there are specific we call him clusters, you know, groupings of people that are manifesting a sort of similar response. And it may be that the underlying mechanism, the thing that's causing it, is common, and that may end up triggering us, giving us clues to what we need to do to help them feel better. But the next, a proximate step is to bring together this large community, bring together lots of people and then understand who's like each other, and then connect them and then see again we can share wisdom, learn from each other, and in this partnership with the patients as participants, as true teammates in the research, begin to start to make progress in ways that we haven't been able to do before. Coming up the internal vibrations like a earthquake inside your body. What is it like to live with long covid? If the air purifier wasn't like all the way up, I would get swelling in my throat. If I wasn't eating this right, this particular carrot that we would order from target, I would get swelling in my throat. We spotlight the upended lives of a few long haulers. My lowest physical moment was loan COVID. It would be difficult to describe because I call it the Corona coaster. It goes up and down. Lisa Fisher is a thirty eight year old long hauler living in Houston, Texas. She first contracted COVID in June of with respiratory symptoms so bad in the first month she went to the e R three times. The third e ER visit led to my hospitalization in a COVID I See You, and that was on July one. That was five weeks after my initial presentation of symptoms. And I was in the I See You that first week and then went into a rehab hospital first several months. After ten days into her rehab stet, a whole range of debilitating neurological symptoms took hold of Liz's body. Heavily Parkinsonian like tremors which started in my right leg and then moved throughout my body. In addition, I got the internal tremors or vibrations that people speak of neuropathy in all four stages um and I developed a stutter and lost my speech, and that's when I lost my ability to walk. The internal vibrations are like a earthquake inside your body, or if it's a better visualization, if you were to put your hand on a train track and if you could sense that, just that feeling and then have that run through your entire body. And then there's also the feeling of a cell phone buzzing, and I get that like almost as if it was implanted into my bone, and that just kind of like goes on and off. And then there's actual tremor of the hand, Like right now, it's kind of light, but that's more of like a Parkinsonian tremor, and for someone who gets slow blood sugar, uh, it may be similar to experiencing that, but you can't get out of it. My life before COVID was completely different. I was a time flight attendant, international flight attendant, part time you open instructor. I lived a very active life. I traveled around the world. I was social with my friends. I was very independent. Um, yeah, it's very very different my life now since COVID is very dependent. My mother had to move in from Ohio, which we thought for a couple of months, and she's still here. And she no longer works. I'm unable to drive. I don't cook for myself. I don't do my own laundry or really clean for myself. Yet it just takes too much energy and I haven't been able to do it all with my tremors. Currently, I go to rehab five days the weeks. Let's see, I have truth very I think four different types of rehab, and then I see a nutritionist. UM, I have a strength program to still build different types of muscles back. I am in the care of ten different specialists. I try to go to yoga. I'm that's very important part of my life. It just kind of gives me, keeps me centered and grounded, and then I try to do advocacy and research and rest. Eating is probably one of the most challenging things that I do in my day. The amount of energy that it takes to just eat and then digest and process the food a lot of times is more energy than I get from the food. So I have to have small meals throughout the day, and a lot of times it will like a half a bowl of oatmeal will take me two hours and I may fall asleep eating it. The financial burden has been stressful. I was blessed in that when I was in the hospital, my friends, family and colleagues had started to go fund me, which kept me afloat and paying my rent and utilities while I was in the hospital, and uh, my doctors and all of the medical staff while I was in the rehab hospital urged me to apply for disability, which I struggled with that concept at the time, but later in did apply for disability and was approved. In a lot of the other payments are coverages on like the affordable healthcare don't cover a lot of my specialists and medications and not so my family has had to dip into uh, you know, collective our retirement savings, UM, things like that. And you know, my mom and I live in a one bedroom apartment together. It's just we we make do we The family decided together as a collective we would do whatever it takes. One of the therapists in my rehab hospital said that you need to take some time to grieve the life that you thought you were going to live, and that was a very hard thing to hear, but in a way a necessary one. I was very angry about having long haul COVID, especially in the beginning. I was just so upset, and I just kept being like, why is this happening? Like why did this happen to me? Like? Why am I not better? This is Janine Hayes, a forty three year old long hauler. Janine and her husband Brian Mason, started out the pandemic living in Brooklyn in March of Brian was the first to get COVID. While Brian suffered a scary bout of double pneumonia, Jenny's initial COVID symptoms barely registered. We were really getting him better than I started to get these just frange allergies. After having what felt like a forty eight hour stomach bug, it was really let me. Three to four weeks later that I just started to get like the burning feet, um, breaking out in hives, breaking out in rashes. Um. You know, I would eat something, my throat would swell. I was just becoming more and more allergic to our apartment, just everything in it. UM was just suddenly like a mine field of allergy attacks. By August of he had to give me the EPI pens because I ended up going into full anaphylaxis two days in a row um just after eating lunch Um, it was as if I was allergic to the entire place, Like I'd have to wear a mask inside all day. We had to always have like the air conditioning like on full blast, because for some reason, Um, if the apartment or if the place was too warm, I would get swelling in my throat. Um, if the air purifier wasn't like all the way up, I would get swelling in my throat. If I wasn't eating this right, this particular carrot that we would order from Target, I would get swelling in my throat. Our doctors were trying to help as much as possible. They were, like every doctor at that time, learning with us. So I contacted the Mayo clinic. UM. I wrote them my story, and I was like, can I get in to the Mayo Clinic? This is what's happening to me. I sent a letter to Johns Hopkins, because again there was another place I knew had been doing it, being at the forefront of public health. And then both of them send a rejection letter, We're not able to accept your case. And then it was in like in the fall, that our doctor had heard that Mount sign I was starting a post COVID care center. UM and she said, Okay, this is where you guys need to get in. We were really excited. We called and they were like, the first appointment is March three. So for those six months, six or seven months, we were sort of on our own. That's Brian. Brian took over, as you means, full time caregiver, helping her twenty four hours a day while also researching and recruiting a team of doctors to address her wide ranging symptoms from the allergies to neurological issues to cardiac concerns. And so those months were a process of basically interviewing and vetting doctors and saying, Okay, UM, here's our situation, Um, are you interested in being a part of this, because it's it's a it's a fairly it's a dire situation. We're trying, basically, at this point, every day to keep her alive and every night, you know, I'm basically staying up all night making sure that she's awake, she's breathing, that she's making it through the night. It was a learning course for me, and I guess in medical advocacy, we're very open about saying we had a fantastic medical experience, specifically as African Americans, but also understanding that that is not the case always for African Americans and saying that that was always not even the case for us. Those instances did pop up where you know, we received a certain level of treatment or certain reactions from doctors that was clear We're clearly based on our race. And in those instances we said, well that's fine, thank you, know, thank you. We're going to you know, work with somebody who's going to work with us. And I think Brian always is so like gracious. He always says, like we were doing this, but like he was doing this, I was just like a lump, like I wasn't really doing anything. He was keeping me alive. But things were looking up for Janine. The couple moved out of Brooklyn and bought a house a few hours north of the city. They had built some structure and a strict medicine regiment that kept Janine relatively protected from extreme allergy outbreaks. They felt safe. That was actually an exciting time. I was, you know, we felt like we had had like a regiment, like we're like, all right, these are the foods that you can eat, like the house. The house is like we're now in a very rural area, so the air is so fresh here. And actually I was doing really well, and a family member, wanting to celebrate us buying our first house, sent a plant. UM, a house plant. One day, I decided I was going to trim it, and whatever it released, UM, it started a massive attack for me. I again went into anaphylaxis. UM. Brian had to administer the EpiPen and we had to call nine one two EpiPens and we had to call nine one one and be transported to the emergency room, which is fortunately just a few minutes from our home. So that was when things got really bad. So everything that had happened before we thought was bad. Uh, turns out that was sort of the kind of the warm up round UM without kind of trying to YadA YadA YadA things too much. By the end of the year, she was no longer able to walk, speak, or eat. She was entirely bedridden. She was on a series of medicines UH steroids, high dose steroids that were camping down her immune system to control the ant flaxis UM. But as a result of that, she also developed sort of a body wide infection that made things even worse. UM. She became far weaker than than I've ever seen her. I felt like I was dying, Like I, it's so close as I've ever felt to that. Um, I felt myself slipping away. She had gone from being a smiling, happy, energetic person too being mute and in pain and really and angry all the time. Because she was she couldn't communicate. But finally the data arrived for their appointment at the Mount Sinai Post COVID Care Center early in the morning on March third. They piled into a car they borrowed from their neighbors and drove the two hours from their home to New York City. We got there to the post COVID Care Center and we met with the doctor. And I will never forget that. The first thing she said was she listened to everything. And then after that she said, it's going to be okay. Everyone who comes here gets better. And just to hear that was like it was just because I was like, I felt like, oh, this is it, Like this is my life now, Like I can't really move, I can't really eat, I can't really do anything. And and to hear that I could get better, and I didn't believe her. I have to say. She was like, in six months, you will be on a much much better than you are today. And I was like, there's no way in six months, I'm going to be able to walk better and eat better and and all of this stuff. But he did, he did, he did see it. The really amazing thing with the COVID Care Center was that they were now they were able to give us diagnosed he is, and they're able to let us know reshures that everything that she had was treatable, that it had all been caused by But these are all things that would improve. As much as we talk about how amazing o our our medical team has been over the course of this, we do also understand that we're only able to access this level of healthcare, you know, because of the Affordable Care Act. It feels like we have this belief, this feeling in this country that you only deserve as much as you can afford, and we're seeing that pushed more and more to the forefront with COVID. You know, this idea that if you can afford the health care that will help you to live, then you can live. Yeah. And if you know there are people listening to this that are thinking about the solutions. I just hope that they understand, like we you know, this is a disability, like long COVID is a disability. Um, you can't go back to life as you were. I look back at my photos in my phone. When you now, your photos like will pop up and they'll be like what you did like three years ago, and I'll be like, oh my god. On this one day, we were like at an art opening, we went out to a dinner, we went to a party, and we didn't get home to like three o'clock in the morning. And that was very normal for us to be out all night and going out with friends and you know, um, you know, just kind of a crazy, like crazy New York City. And I'm now, I'm like, I can't do that, Like I can't go to a restaurant. We don't go to restaurants because, um, I don't know all the ingredients that are in the food. Even when we visited some family over the holidays, we brought all of our own food because he had to cook my menu of like approved items that I can eat. When people do come here, we do tell them you can't wear anything that's perfumed. That means no like lotions that have perfumed in them. We are like, we give a list of like you could use an unscented soap from this brand. That's good. UM, don't put product in your hair because we can't have anything like that. Nothing's incidentally or everything is a strategy. Everything's a plan in every detail matters, because you know, something as as small as moving a house plant can can cause a serious problem. We need help from the government in terms of UM being able to take care of our care We need help for caretakers like my husband because he's doing this full time and making sure that we have a company UM that still continues to run. I just want people to understand that the long haul is a long haul. We'll be right back. My life before COVID was UM, it was a beautiful life. It was a very active life. Shamir L. Smith is a thirty nine year old middle school teacher living in Baltimore, Maryland. Being a teacher was like was that job in that career was? It was a God send to me, the best career I've ever had. Like Janine, Shamir's long COVID journey turned her life upside down. Also, like Janine's, Shamir's story reveals some ugly truth about our health care system. I first experienced my symptoms March twenty. I will never ever forget that day. It started off very mildly. I thought that I had a sore throat and a little bit of a cough. Was Shortly thereafter, those symptoms begin to grow into more and and too more serious symptoms. After that, I was afraid and I wanted help, and they assured me that nothing was wrong. I was turned away many times my life, in my relationships. How I view doctors UM have changed um today, Even today, I feel fear and anxiety when I think about going to a doctor's office. Not just because COVID is still running rampant. It's because I don't trust doctors. I don't trust that they have my best interests at heart. I've I've experienced a plethora of doctors who weren't listening to me. They weren't hearing me, they weren't thinking about me. They were arguing with me about my condition and how I felt, and they weren't trying to treat me. And I'm gonna tell you the truth. As a black woman, since I started working at sixteen, I was always told by my mother, my auntie's and other women and my family and other women who were my friends and um older friends who said, girl, you've got to make sure you cover yourself in everything where you work. And so what I learned from that is, no matter what I was doing, to always take notes about my experience and what happened, that advice was ingrained in me as a black woman when I went to hospitals and medical centers and and and laboratories. For me, what I knew from the very beginning, from the very first time I went to the hospital, is that there is an expectation, an unspoken bias, that black people are not aware of their bodies, and so we have to work harder to convince doctors about what is happening in our bodies and the kind of care that we need. Because as I was starting to read notes off my phone with fifty plus symptoms and what happened every day to me and my journal entries off my phone, those doctors were looking at me and awe because they couldn't believe that this black woman knew how to articulate what was happening inside of me. I argue with a doctor as I sat in the host fital for seven days. I argued with him about the fact that um long COVID caused occipital near Rouga and try Geminal no Rouga. He tried to convince me, well, no, I went to Hopkins. I I know what's going on and and and and COVID doesn't cause any brain issues, only for us to find out two years later that it absolutely does. And so I think for a lot of us, as black people, we already know that from the workplace in education, uh illegal matters to see Y ain't. And so what that means is just to cover our butts, to make sure that in writing what we are saying and experiencing can also be translated and transcribed to doctors. Because I knew that if I did not take those notes as a black woman, that because of the racism that I experienced, I had a feeling that I would not be taken seriously. Six hundred miles west in Louisville, Kentucky, Deepest Singh was also having a hard time getting help. I would go into these appointments and I couldn't be taken seriously. Deepa is thirty now, but she was twenty eight when she started seeking answers for her long COVID symptoms. I've already been to so many appointments where I was told, oh, you have a sinus infection, or you have allergies, you have anxiety, anxiety induced by this pandemic in these lockdowns, and because of that, I would switch providers and I'm like, okay, well, this is a dead end. Let's go to this other provider. Okay, that's a dead endless drugs, other provider. And I believe that first year I had seventy plus medical claims alone. I was starting to believe that the providers who were telling me was psychosomatic and it was anxiety driven. I truly felt like, okay, well and having a mental break. I saw a hospital treatment care and care about twelve times over six months. I was turned away many times. But before I was turned away, I often was told that I wasn't well in my head, I was too anxious, and I was also you know, sadly, you know this affects me as a black woman. I was seen after white men and other men, um like I wasn't receiving the same kind of care as the men in the hospital across from me. And that was devastating. I have insurance. I've been working as a teacher at that time for five years. I checked off all the boxes that would have made me um a candidate to get care, and I didn't receive the care that I deserved. And I know that many people don't either, even still after two years. Tomorrow, on Next Question, Who's helping long COVID sufferers get the care they need and deserve, we unpacked the systemic issues at the heart of these patients experiences and explore the heroic efforts of the few heating the long COVID call. That's part two of our long COVID deep dive coming tomorrow. To see some of the experiences of our long COVID patients, you can check out my YouTube page, where my video team has posted powerful stories of the many and varied ways long COVID has affected the people with whom we spoke. If you're suffering long COVID symptoms and are looking for some help, you can reach out to long COVID support groups like Body Politic and Survivor Cores. Thanks so much for listening. Next Question with Katie Curic is a production of My Heart Media and Katie Kuric Media. The executive producers are Me, Katie Kuric, and Courtney Litt. The supervising producer is Lauren Hansen. Associate producers Derek Clements and Adriana Fasio. The show is edited and mixed by Derrick Clements. For more information about today's episode, or to sign up for my morning newsletter, wake Up Call, go to Katie correct dot com. You can also find me at Katie Curic on Instagram and all my social media channels. For more podcasts from I Heart Radio, visit the I Heart Radio app, Apple Podcast, or wherever you listen to your favorite shows,

Hi everyone. I'm Katie Couric, and this is next question. I think in the back of my mind, I always knew I hadn't fully recovered. There have been symptoms that I had in the beginning that have never gone away, And now that it's been over a year, I look back and I started sort of see these patterns. No one was talking about stuff like that, so it didn't seem like it was COVID related at all. Honestly, I kept very copious notes because I was afraid and I wanted help, and they assured me that nothing was wrong. It's not just a handful of symptoms. We're talking it out. We're talking about it messes up your entire body, Okay, symptoms, nausea, headache, head It feels like sometimes there's twenty rubber bands, tight rubber bands around my skull at any time. Feeling of water dripping on leg sore muscles, fatigue from marathons. In my life now it's kind of like walking the dog around the block is like a big ask having struggles some days walking from my living room so to the hallway restaurant, I couldn't even think without becoming very tired. I felt like I have been drugged, honestly, gas, ro intestinal issues, hives, lack of ability to concentrate, chicken skin, memory lapses, white lost hearing for a couple of months, tingling on back, soreness, and back. I've experienced tendus tenitus, and that's like a ring in your ears, ringing in my ears. It was more like a screeching. It was more like a like a storm siren mixed with the static from TV's back in the nineties. If you were to put your hand on a train track and if you could sense that, just that feeling, and then have that run through your entire body. It feels like if my spine was like a hollow metal pole and someone took a metal baseball bat and wept it like that zlink, that reverberating metal sound. That's what the pain feels like in my spine. One day, I was actually screaming. I was like, my feet are on fire and I'm screaming. Clumps of my hair were falling out, random raising, insomnia, hypersomnia, where to go, spasms, h pain, vision issues, cold extremities, temperature regulation, confusion, brain fog, comprehension. I can't stand the name brain fog. I think it's putting it very mildly. It's not just forgetfulness. For all intents and purposes, I have dementia. I don't know what's going to be gone next. I have forgotten my phone number, I have forgotten my age. I have not been able to figure out where I live. I'd spent a long time thinking, Okay, this is just in xiety. After all, that's what the doctors keep telling me, that's what the providers keep telling me. So let's buckle down work. We've got bills. Tokay. It just never gets better. It just it just never gets better. Nothing ever changes. It's like ground on set, and it has changed my life. It has turned it upside down. This is a disability. Blong COVID is a disability. We're trying to find, not a sense of normalcy, but we're trying to find ways to manage our new lives, our new bodies. You need to take some time to grieve the life that you thought you were going to live. And I can't verbally express how absolutely soul crushing all of this was to experience. The voices you just heard are from people suffering from long COVID, people who generously shared their stories with us. My name is Janine Hayes, Jack Guest, Lisa Fisher, deep as saying, Shamir L. Smith, Rebecca Hogan, and I have been experiencing I've been living with and all of us are living with long long COVID, long post acute COVID CENTRUMP. Long COVID goes by a lot of different names, long haul COVID, post COVID nineteen or the more formal pasque post acute sequel I of stars COVID two. Even though COVID nineteen has been with us for more than two years, infecting more than eighty million Americans and killing almost one million people in this country alone, long COVID remains a mystery, But what is becoming increasingly clear is is that an alarming number of people are suffering from it, and it's greater impact on individuals, the health system, the labor force, and the economy can no longer be ignored. I believe this long COVID will be sort of a parallel pandemic of people with disabilities and need for a lot of medical attention. Who's going to have a hard time getting those things today? Our next question understanding long COVID, what it is what it can do to the body who's affected, and how it's up ending countless lives. My name is Kikasaki. I'm a professor of immunobiology at the Yale University School of Medicine. My name is Harling croum Holtz. I'm a cardiologist at Yale University, and I'm the director of the Yale Center for Outcomes Research and Evaluation. It's an interesting question how I got involved in long COVID. I I'm a cardiologist, so it's not where I would naturally be. But in the time of the pandemic, all of us with skills and researched and with interest in trying to make a contribution came together and applied ourselves at first to the cute phases of the pandemic, and then over time I began to see that that there was a very important area here that was largely neglected. That was this this long tale of COVID people who were suffering after having an episode of COVID, and it never seemed to end, that it went on for for quite a long time and caused quite a lot of disability, And so I was I was drawn to do it. I had been working with the patient groups, and they had been raising issues and I've been listening, and I had the great fortune to start working with the Kiko Iwasaki, world renowned immunologists, and we began to think together how we might be able to address some of these questions. Let's start with the basics. What is long COVID? How is it being defined? Long COVID describes a state of a person with lingering symptoms OFF or you've gotten acute phase of COVID, either severe, moderate, or mild disease. In some cases, a symptomatic COVID can turn into long COVID, and it's essentially people suffering from long term symptoms for at least four weeks after the infection um UH. And that's the CDC guideline and the w h O guideline is similar, but it's slightly different in saying that within the first three months of COVID you basically suffer from long term symptoms as lasting over two months. But in both cases the definition includes UH longevity of the disease as well as what happens after the acute phase of the COVID. While long COVID feels new, it's actually not the first virus that's caused lingering symptoms in some people, the bowl of virus, the original stars virus, epstein bar virus. These are all known to trigger long term symptoms in some survivors. Even flu can cause long flu. However, with the COVID, we are seeing, you know, millions of people infected at once and seeing large proportion of these people still having um long COVID afterwards. And so this really has shifted the way we think about acute viral infections in that there's this huge possibility of causing debilitating disease even after so called recovery from an acute infection. You've already heard some of the symptoms associated with long COVID, but the sheer number of those symptoms, more than two hundred, is astounding. There is a great diversity of symptoms that people are manifesting from this long COVID, and and it's hard to say whether one is more important than the other because it depends on the individual. And so we're hearing a lot about rainfall, we're hearing a lot about fatigue, but we're also hearing a lot about other things that that are sort of we wouldn't really associate with with a post viral syndrome. I mean ringing in the ears. Dentatis is something we hear about. We hear about gastro intestinal issues. We are about changes in menstrual periods. We hear about um the tingling in the vibrations, we hear about the tremors, muscular skeletal stuff. We hear a lot of neurologic issues. And I've had so many people say to me, is there anyone else like me? You know, people are feeling this great sense of isolation. They're feeling scared and wondering if they're the only ones in the world who are experiencing this, because when they go in to see it a healthcare professional, maybe they're getting a reaction like wow, I've never seen this before, and they're wondering, am I alone in this? And then that's what makes them wonder maybe it's in my head. And yet when we start seeing that there are many people who haven't never met each other but are exhibiting the exact same thing, that's making us think maybe maybe you're not alone. You know. In fact, we say that more certainly, you know you're not alone. By some estimates, long COVID has pushed as many as one point six million workers out of the labor force, and we still don't have a clear idea just how many people are suffering. One study released by the Journal of the American Medical Association late last year suggests that at least half of people who survived COVID nineteen face linkering symptoms, and the range of experiences is all over the map. Some people are so severely affected that they cannot operate normally and that they cannot return to work. Some people are bit bound. Others have multiple symptoms but they are still able to go to work, um possibly not the same extent that they were doing before. And others have just a limited number of symptoms but they're lingering for extended time. Pierre, You, so the severity differs dramatically between people. Researchers have started to unlock a few clues about long COVID, like white affects some people but not others. So there are at least two, if not for, different hypotheses that explain long COVID. One of the hypothesis is that there may be persistent virus or remnants of virus such as protein and urnate from the virus that lingers in these patients, and when those things are not cleared properly, then you would develop chronic inflammation as a result, and that could be driving the long COVID disease. The second hypothesis is autoimmune disease. That an acute viral infection like source covid too could trigger autoimmune disease in people. And autoimmune disease essentially means that your own immune system starts attacking your own proteins and molecules UM, and when that happens, it's very difficult to stop ALLO I mean reactivation activation of these cells, and therefore that could be driving long term consequences UM. There are other hypotheses such as reactivation of latent viruses that we all have in our body that's usually dormant, but as a result of covid UH, those viruses reactivate and cause disease, such as um epstein bar virus or other herpes virus family members. UM. There's also a possibility that your gut microbiome, the bacteria that live in the gut or in other areas, may also shift as a result of the COVID and that could trigger some inflammation as well. And then there's also this UH tissue damage, especially from people who have had severe COVID, that there is significant damage that occur in various tissues, including the lung and other places that may be very difficult to repair, and that's causing a long COVID. So there are many different hypotheses UM, all of which currently have UM emerging supporting evidence. For the good news is that understanding what causes long COVID will eventually help treat it. The treatment of different symptoms for a long COVID is a big challenge um first of all, because there are so many symptoms that people report at the same time, so the treatment would differ dramatically depending on what the person is suffering from. And that's why we are really trying to understand the underlying mechanism of disease so we can properly first of all, classify the patients into who's suffering from what causes and then we can establish a clinical trial to test different drugs that may work against that particular cause sitive agent. I think the key thing is now is just to admit that one day ignorance to that there's a wide variety of symptoms. Some people have taken this wide variety of symptoms and used it to suggest there is no common long COVID that this is this is evans. I take it as evidence that maybe there are specific we call him clusters, you know, groupings of people that are manifesting a sort of similar response. And it may be that the underlying mechanism, the thing that's causing it, is common, and that may end up triggering us, giving us clues to what we need to do to help them feel better. But the next, a proximate step is to bring together this large community, bring together lots of people and then understand who's like each other, and then connect them and then see again we can share wisdom, learn from each other, and in this partnership with the patients as participants, as true teammates in the research, begin to start to make progress in ways that we haven't been able to do before. Coming up the internal vibrations like a earthquake inside your body. What is it like to live with long covid? If the air purifier wasn't like all the way up, I would get swelling in my throat. If I wasn't eating this right, this particular carrot that we would order from target, I would get swelling in my throat. We spotlight the upended lives of a few long haulers. My lowest physical moment was loan COVID. It would be difficult to describe because I call it the Corona coaster. It goes up and down. Lisa Fisher is a thirty eight year old long hauler living in Houston, Texas. She first contracted COVID in June of with respiratory symptoms so bad in the first month she went to the e R three times. The third e ER visit led to my hospitalization in a COVID I See You, and that was on July one. That was five weeks after my initial presentation of symptoms. And I was in the I See You that first week and then went into a rehab hospital first several months. After ten days into her rehab stet, a whole range of debilitating neurological symptoms took hold of Liz's body. Heavily Parkinsonian like tremors which started in my right leg and then moved throughout my body. In addition, I got the internal tremors or vibrations that people speak of neuropathy in all four stages um and I developed a stutter and lost my speech, and that's when I lost my ability to walk. The internal vibrations are like a earthquake inside your body, or if it's a better visualization, if you were to put your hand on a train track and if you could sense that, just that feeling and then have that run through your entire body. And then there's also the feeling of a cell phone buzzing, and I get that like almost as if it was implanted into my bone, and that just kind of like goes on and off. And then there's actual tremor of the hand, Like right now, it's kind of light, but that's more of like a Parkinsonian tremor, and for someone who gets slow blood sugar, uh, it may be similar to experiencing that, but you can't get out of it. My life before COVID was completely different. I was a time flight attendant, international flight attendant, part time you open instructor. I lived a very active life. I traveled around the world. I was social with my friends. I was very independent. Um, yeah, it's very very different my life now since COVID is very dependent. My mother had to move in from Ohio, which we thought for a couple of months, and she's still here. And she no longer works. I'm unable to drive. I don't cook for myself. I don't do my own laundry or really clean for myself. Yet it just takes too much energy and I haven't been able to do it all with my tremors. Currently, I go to rehab five days the weeks. Let's see, I have truth very I think four different types of rehab, and then I see a nutritionist. UM, I have a strength program to still build different types of muscles back. I am in the care of ten different specialists. I try to go to yoga. I'm that's very important part of my life. It just kind of gives me, keeps me centered and grounded, and then I try to do advocacy and research and rest. Eating is probably one of the most challenging things that I do in my day. The amount of energy that it takes to just eat and then digest and process the food a lot of times is more energy than I get from the food. So I have to have small meals throughout the day, and a lot of times it will like a half a bowl of oatmeal will take me two hours and I may fall asleep eating it. The financial burden has been stressful. I was blessed in that when I was in the hospital, my friends, family and colleagues had started to go fund me, which kept me afloat and paying my rent and utilities while I was in the hospital, and uh, my doctors and all of the medical staff while I was in the rehab hospital urged me to apply for disability, which I struggled with that concept at the time, but later in did apply for disability and was approved. In a lot of the other payments are coverages on like the affordable healthcare don't cover a lot of my specialists and medications and not so my family has had to dip into uh, you know, collective our retirement savings, UM, things like that. And you know, my mom and I live in a one bedroom apartment together. It's just we we make do we The family decided together as a collective we would do whatever it takes. One of the therapists in my rehab hospital said that you need to take some time to grieve the life that you thought you were going to live, and that was a very hard thing to hear, but in a way a necessary one. I was very angry about having long haul COVID, especially in the beginning. I was just so upset, and I just kept being like, why is this happening? Like why did this happen to me? Like? Why am I not better? This is Janine Hayes, a forty three year old long hauler. Janine and her husband Brian Mason, started out the pandemic living in Brooklyn in March of Brian was the first to get COVID. While Brian suffered a scary bout of double pneumonia, Jenny's initial COVID symptoms barely registered. We were really getting him better than I started to get these just frange allergies. After having what felt like a forty eight hour stomach bug, it was really let me. Three to four weeks later that I just started to get like the burning feet, um, breaking out in hives, breaking out in rashes. Um. You know, I would eat something, my throat would swell. I was just becoming more and more allergic to our apartment, just everything in it. UM was just suddenly like a mine field of allergy attacks. By August of he had to give me the EPI pens because I ended up going into full anaphylaxis two days in a row um just after eating lunch Um, it was as if I was allergic to the entire place, Like I'd have to wear a mask inside all day. We had to always have like the air conditioning like on full blast, because for some reason, Um, if the apartment or if the place was too warm, I would get swelling in my throat. Um, if the air purifier wasn't like all the way up, I would get swelling in my throat. If I wasn't eating this right, this particular carrot that we would order from Target, I would get swelling in my throat. Our doctors were trying to help as much as possible. They were, like every doctor at that time, learning with us. So I contacted the Mayo clinic. UM. I wrote them my story, and I was like, can I get in to the Mayo Clinic? This is what's happening to me. I sent a letter to Johns Hopkins, because again there was another place I knew had been doing it, being at the forefront of public health. And then both of them send a rejection letter, We're not able to accept your case. And then it was in like in the fall, that our doctor had heard that Mount sign I was starting a post COVID care center. UM and she said, Okay, this is where you guys need to get in. We were really excited. We called and they were like, the first appointment is March three. So for those six months, six or seven months, we were sort of on our own. That's Brian. Brian took over, as you means, full time caregiver, helping her twenty four hours a day while also researching and recruiting a team of doctors to address her wide ranging symptoms from the allergies to neurological issues to cardiac concerns. And so those months were a process of basically interviewing and vetting doctors and saying, Okay, UM, here's our situation, Um, are you interested in being a part of this, because it's it's a it's a fairly it's a dire situation. We're trying, basically, at this point, every day to keep her alive and every night, you know, I'm basically staying up all night making sure that she's awake, she's breathing, that she's making it through the night. It was a learning course for me, and I guess in medical advocacy, we're very open about saying we had a fantastic medical experience, specifically as African Americans, but also understanding that that is not the case always for African Americans and saying that that was always not even the case for us. Those instances did pop up where you know, we received a certain level of treatment or certain reactions from doctors that was clear We're clearly based on our race. And in those instances we said, well that's fine, thank you, know, thank you. We're going to you know, work with somebody who's going to work with us. And I think Brian always is so like gracious. He always says, like we were doing this, but like he was doing this, I was just like a lump, like I wasn't really doing anything. He was keeping me alive. But things were looking up for Janine. The couple moved out of Brooklyn and bought a house a few hours north of the city. They had built some structure and a strict medicine regiment that kept Janine relatively protected from extreme allergy outbreaks. They felt safe. That was actually an exciting time. I was, you know, we felt like we had had like a regiment, like we're like, all right, these are the foods that you can eat, like the house. The house is like we're now in a very rural area, so the air is so fresh here. And actually I was doing really well, and a family member, wanting to celebrate us buying our first house, sent a plant. UM, a house plant. One day, I decided I was going to trim it, and whatever it released, UM, it started a massive attack for me. I again went into anaphylaxis. UM. Brian had to administer the EpiPen and we had to call nine one two EpiPens and we had to call nine one one and be transported to the emergency room, which is fortunately just a few minutes from our home. So that was when things got really bad. So everything that had happened before we thought was bad. Uh, turns out that was sort of the kind of the warm up round UM without kind of trying to YadA YadA YadA things too much. By the end of the year, she was no longer able to walk, speak, or eat. She was entirely bedridden. She was on a series of medicines UH steroids, high dose steroids that were camping down her immune system to control the ant flaxis UM. But as a result of that, she also developed sort of a body wide infection that made things even worse. UM. She became far weaker than than I've ever seen her. I felt like I was dying, Like I, it's so close as I've ever felt to that. Um, I felt myself slipping away. She had gone from being a smiling, happy, energetic person too being mute and in pain and really and angry all the time. Because she was she couldn't communicate. But finally the data arrived for their appointment at the Mount Sinai Post COVID Care Center early in the morning on March third. They piled into a car they borrowed from their neighbors and drove the two hours from their home to New York City. We got there to the post COVID Care Center and we met with the doctor. And I will never forget that. The first thing she said was she listened to everything. And then after that she said, it's going to be okay. Everyone who comes here gets better. And just to hear that was like it was just because I was like, I felt like, oh, this is it, Like this is my life now, Like I can't really move, I can't really eat, I can't really do anything. And and to hear that I could get better, and I didn't believe her. I have to say. She was like, in six months, you will be on a much much better than you are today. And I was like, there's no way in six months, I'm going to be able to walk better and eat better and and all of this stuff. But he did, he did, he did see it. The really amazing thing with the COVID Care Center was that they were now they were able to give us diagnosed he is, and they're able to let us know reshures that everything that she had was treatable, that it had all been caused by But these are all things that would improve. As much as we talk about how amazing o our our medical team has been over the course of this, we do also understand that we're only able to access this level of healthcare, you know, because of the Affordable Care Act. It feels like we have this belief, this feeling in this country that you only deserve as much as you can afford, and we're seeing that pushed more and more to the forefront with COVID. You know, this idea that if you can afford the health care that will help you to live, then you can live. Yeah. And if you know there are people listening to this that are thinking about the solutions. I just hope that they understand, like we you know, this is a disability, like long COVID is a disability. Um, you can't go back to life as you were. I look back at my photos in my phone. When you now, your photos like will pop up and they'll be like what you did like three years ago, and I'll be like, oh my god. On this one day, we were like at an art opening, we went out to a dinner, we went to a party, and we didn't get home to like three o'clock in the morning. And that was very normal for us to be out all night and going out with friends and you know, um, you know, just kind of a crazy, like crazy New York City. And I'm now, I'm like, I can't do that, Like I can't go to a restaurant. We don't go to restaurants because, um, I don't know all the ingredients that are in the food. Even when we visited some family over the holidays, we brought all of our own food because he had to cook my menu of like approved items that I can eat. When people do come here, we do tell them you can't wear anything that's perfumed. That means no like lotions that have perfumed in them. We are like, we give a list of like you could use an unscented soap from this brand. That's good. UM, don't put product in your hair because we can't have anything like that. Nothing's incidentally or everything is a strategy. Everything's a plan in every detail matters, because you know, something as as small as moving a house plant can can cause a serious problem. We need help from the government in terms of UM being able to take care of our care We need help for caretakers like my husband because he's doing this full time and making sure that we have a company UM that still continues to run. I just want people to understand that the long haul is a long haul. We'll be right back. My life before COVID was UM, it was a beautiful life. It was a very active life. Shamir L. Smith is a thirty nine year old middle school teacher living in Baltimore, Maryland. Being a teacher was like was that job in that career was? It was a God send to me, the best career I've ever had. Like Janine, Shamir's long COVID journey turned her life upside down. Also, like Janine's, Shamir's story reveals some ugly truth about our health care system. I first experienced my symptoms March twenty. I will never ever forget that day. It started off very mildly. I thought that I had a sore throat and a little bit of a cough. Was Shortly thereafter, those symptoms begin to grow into more and and too more serious symptoms. After that, I was afraid and I wanted help, and they assured me that nothing was wrong. I was turned away many times my life, in my relationships. How I view doctors UM have changed um today, Even today, I feel fear and anxiety when I think about going to a doctor's office. Not just because COVID is still running rampant. It's because I don't trust doctors. I don't trust that they have my best interests at heart. I've I've experienced a plethora of doctors who weren't listening to me. They weren't hearing me, they weren't thinking about me. They were arguing with me about my condition and how I felt, and they weren't trying to treat me. And I'm gonna tell you the truth. As a black woman, since I started working at sixteen, I was always told by my mother, my auntie's and other women and my family and other women who were my friends and um older friends who said, girl, you've got to make sure you cover yourself in everything where you work. And so what I learned from that is, no matter what I was doing, to always take notes about my experience and what happened, that advice was ingrained in me as a black woman when I went to hospitals and medical centers and and and laboratories. For me, what I knew from the very beginning, from the very first time I went to the hospital, is that there is an expectation, an unspoken bias, that black people are not aware of their bodies, and so we have to work harder to convince doctors about what is happening in our bodies and the kind of care that we need. Because as I was starting to read notes off my phone with fifty plus symptoms and what happened every day to me and my journal entries off my phone, those doctors were looking at me and awe because they couldn't believe that this black woman knew how to articulate what was happening inside of me. I argue with a doctor as I sat in the host fital for seven days. I argued with him about the fact that um long COVID caused occipital near Rouga and try Geminal no Rouga. He tried to convince me, well, no, I went to Hopkins. I I know what's going on and and and and COVID doesn't cause any brain issues, only for us to find out two years later that it absolutely does. And so I think for a lot of us, as black people, we already know that from the workplace in education, uh illegal matters to see Y ain't. And so what that means is just to cover our butts, to make sure that in writing what we are saying and experiencing can also be translated and transcribed to doctors. Because I knew that if I did not take those notes as a black woman, that because of the racism that I experienced, I had a feeling that I would not be taken seriously. Six hundred miles west in Louisville, Kentucky, Deepest Singh was also having a hard time getting help. I would go into these appointments and I couldn't be taken seriously. Deepa is thirty now, but she was twenty eight when she started seeking answers for her long COVID symptoms. I've already been to so many appointments where I was told, oh, you have a sinus infection, or you have allergies, you have anxiety, anxiety induced by this pandemic in these lockdowns, and because of that, I would switch providers and I'm like, okay, well, this is a dead end. Let's go to this other provider. Okay, that's a dead endless drugs, other provider. And I believe that first year I had seventy plus medical claims alone. I was starting to believe that the providers who were telling me was psychosomatic and it was anxiety driven. I truly felt like, okay, well and having a mental break. I saw a hospital treatment care and care about twelve times over six months. I was turned away many times. But before I was turned away, I often was told that I wasn't well in my head, I was too anxious, and I was also you know, sadly, you know this affects me as a black woman. I was seen after white men and other men, um like I wasn't receiving the same kind of care as the men in the hospital across from me. And that was devastating. I have insurance. I've been working as a teacher at that time for five years. I checked off all the boxes that would have made me um a candidate to get care, and I didn't receive the care that I deserved. And I know that many people don't either, even still after two years. Tomorrow, on Next Question, Who's helping long COVID sufferers get the care they need and deserve, we unpacked the systemic issues at the heart of these patients experiences and explore the heroic efforts of the few heating the long COVID call. That's part two of our long COVID deep dive coming tomorrow. To see some of the experiences of our long COVID patients, you can check out my YouTube page, where my video team has posted powerful stories of the many and varied ways long COVID has affected the people with whom we spoke. If you're suffering long COVID symptoms and are looking for some help, you can reach out to long COVID support groups like Body Politic and Survivor Cores. Thanks so much for listening. Next Question with Katie Curic is a production of My Heart Media and Katie Kuric Media. The executive producers are Me, Katie Kuric, and Courtney Litt. The supervising producer is Lauren Hansen. Associate producers Derek Clements and Adriana Fasio. The show is edited and mixed by Derrick Clements. For more information about today's episode, or to sign up for my morning newsletter, wake Up Call, go to Katie correct dot com. You can also find me at Katie Curic on Instagram and all my social media channels. For more podcasts from I Heart Radio, visit the I Heart Radio app, Apple Podcast, or wherever you listen to your favorite shows,