Tanzina: It's The Takeaway, I'm Tanzina Vega. One year into the coronavirus pandemic, some people who have been infected with the virus say they still feel symptoms ranging from brain fog, to fatigue, to shortness of breath, long after they test negative. These are the so-called long-haulers. For some of these long-haulers, it feels like there's no end in sight. Yvonne [unintelligible 00:00:26] is a science teacher from Washington state and she first got sick in March, but the real trouble didn't start until five weeks after she contracted COVID.
Yvonne: I knew something was definitely wrong. My heart started beating rapidly, out of breath, hot sweats, cold sweats, really bad headaches to the point where I couldn't function during the day. My days were probably two or three hours long, and then I had to go back to bed. Then I started to get brain fog issues and slurred speech issues. I just let the doctors do the tests. They didn't find anything. It just felt like, "Oh my gosh, I'm going crazy. I'm going insane." Literally, it feels you're dying slowly, and yet nobody is giving you answers.
Tanzina: As Yvonne searched for medical help, she tried to learn to live with her symptoms.
Yvonne: You're trying to get out of the illness. You're trying to say, "Okay, I can fight this. I can get over this." Then you start having maybe one or two good days, where maybe you can get out of bed and you can do things and you try to fight through it. You say, "Okay, I can get it done. I'm going to ignore the pain," but then you collapse. Your heart won't let you go any further, your breath won't let you go any further. You're repeating things in your mind, activities you can't complete and you're just-- Even time to making coffee. You couldn't make coffee because you're just, "Where did I put the coffee filter?"
I ended up actually going from Washington State to New York State to see a neurologist. I'm hoping that with more experience, a neurologist on the East Coast can help me. It's that neurologist that says, "You know what? You obviously had it. I'm seeing hundreds of patients like you and there's nothing we can do." That's a big bombshell because now you're at the point where, "Oh, I do have it. This is as a result of this virus." I've been trying to figure out what's been going on and now somebody's telling me they can't help me at all. I don't know how to even explain it. Your whole life just feels like it's gone and then no one can help you. That's a very devastating moment
Tanzina: With treatment, Yvonne did start to temporarily feel better and she started teaching again.
Yvonne: I did that until November when I had a really bad relapse again. Brain fog returned, heart problems started happening again, tachycardia, out of breath. I collapsed three times during work because I got dizzy getting up. They found I had severe anemia. They found my liver enzymes were very high.
Tanzina: Yvonne's life now is very different than it was before COVID.
Yvonne: Well, first of all, physically, I can't do the same things. I can't even do half of what I used to be able to do. Mentally it takes a toll. My mind isn't quite the same as it used to. I've developed skills to compensate. I do a lot more note-taking. I do a lot more sticky notes everywhere to remind myself. I really feel like parts of my memory have just faded. That's a little bit traumatic. Then, it's just not being able to function. I'm normally a very active person. Having worked two jobs. I have three kids. Always very active and all of a sudden I'm down to counting the hours and counting the amount of time and energy I use during the day. It's like counting calories, but now I'm counting energy units instead. If I go over, like this interview right now, I'm already feeling pain in my chest, so after our interview, I'll probably go to bed for the rest of the day.
Tanzina: Her condition has improved somewhat since then, but she still feels the effects of long-term COVID on a daily basis.
Yvonne: One thing I'm seeing as I turn the corner with my last relapse in November, a lot of us started to fall into depression. Your life is gone. It's no longer the same. You're physically not able to manage a regular life like you did, and there's no answers to that. How do you do that every day and not get depressed, and say, "Will I ever get my life back? Will I die young? Will some of this come back next year or the year after and do more harm again to my body?" The fallout is all this depression for a lot of us not getting the support we need. The other aspect is our own relatives. Some of us have relatives who don't believe that we're going through this. It's very hard for us. I think that takes its mental toll.
Tanzina: Dr. Christian Sandrock is a physician who specializes in infectious diseases and pulmonary and critical care at the University of California Davis in Sacramento. Dr. Sandrock, welcome to the takeaway.
Tanzina: From a medical perspective, Doctor, how do you diagnose the long haulers?
Sandrock: Well, this post-acute COVID syndrome, as we like to call it, or long-haulers, is tough to diagnose, because as you noticed in this segment, many of the tests can actually be normal. It's this mixture of symptoms, which are really what we call nonspecific, fatigue, brain fog, lethargy. In general, having acute COVID, having an infection, and then having these cluster of symptoms at some point afterwards, usually about 60 days or longer, gives you the first clue based on symptoms that they might have, this long haul COVID. Secondarily, there are a number of tests that we can do, for example, pulmonary function testing, which are tests on your lungs that we do to see your lung capacity, how well oxygen moves across your lungs.
Some cardiac imaging that we can do as well, MRIs of your brain. Certain things where we might see some deficits we shouldn't otherwise see in a younger healthy person, even after an infection. That consists to be some added help for the diagnosis, but we still don't have a great sense of what is the classic diagnostic criteria. The scientific community is still forming that together now.
Tanzina: Dr. Sandrock, there is some data on this. So far, what we know is that about a third of the people who were never hospitalized for COVID, still say they have long-term symptoms. About two-thirds of people who were hospitalized for COVID also say they have long-term symptoms. Can you draw any conclusions from this preliminary data?
Sandrock: Well, the data that shows one-third just came out from Washington state in a letter in JAMA just last week, which, even less than a week ago, which was really the first data looking at people who were never hospitalized. The reason that becomes important is we know if you come into the hospital with an acute illness, say it was a trauma, say you have influenza, severe sepsis, any of these severe infections, and you have a prolonged hospital stay in the ICU, you're on life support, you get sedation, you're put in a coma. We already know that that's going to lead to many of the symptoms you heard here from this patient from Washington state.
We know that fatigue, depression, lethargy, decreased exercise tolerance, all of these things will come with that hospital illness. It becomes important to say, what is that severe hospitalization, and what's actually COVID in related to this post COVID syndrome? That's why these studies have become important, that we're now really seeing that people who never were in the hospital, never saw a doctor, are having symptoms now, a year out, six months out, even three months out. I think that becomes really important that this is a real syndrome. One of the first steps we like to focus on is validation in our patients that, "No, you're not crazy. You have a cluster of symptoms, which are really non-specific, but this is all part of what COVID has done to your body."
Tanzina: We just heard from someone, Yvonne who described her symptoms pretty clearly. Dr. Sandrock, would you say that Yvonne's symptoms are typical for what's known as acute COVID post syndrome? [crosstalk] I'm sorry. I may not have gotten the medical definition there accurate.
Sandrock: Not a problem. We in this community in the scientific community are trying to even diagnose it. We just like to say post COVID because it implies you're not infectious, which is key. She is very classic. A mixture of brain fog, some physical findings like shortness of breath, high heart rate, inability to have any stamina, and do exercise. What you know is also important as what she talked about at the end, this reactive depression, where you really have depression from the infection, but also depression from your post-acute COVID syndrome where your life is not the same and you can't do what you've done before. That includes loss of taste and smell, which is really key.
Tanzina: Dr. Sandrock, we heard Yvonne at the very top of the previous segment talking about, not just her, symptoms as a COVID long hauler, but also her struggle going to different doctors and trying to identify what this thing is that she was feeling. You mentioned validating patients
earlier so that they don't feel like they're crazy or that the doctors don't believe them. How important is that for doctors to do?
Dr. Christian: With any disease, honestly, validation is important. We get trained in our medical career to really focus on, "Okay, you have an abnormal test result, or an abnormal finding and physical exam, and that correlates with a disease state." It's hard, in this post-COVID phase, to sometimes find some abnormalities. We are seeing clearly enough people, and we know from other illnesses, that these nonspecific symptoms can persist. It really is important to let people know they're not crazy. Life is moving fast. They can't move fast, for a whole host of other reasons, and we need to adjust life so that they can slowly recover.
That really is the first process because to not be validated, really, we hear about a lot of depression, anxiety, and the psychological effects of chronic disease. We know that not knowing what your illness is, and not being validated, really leads to worse outcomes in those areas down the line. That's the first thing and the simple thing that we can prevent. This is something our patients are feeling. I can't contradict what they're feeling and it's important for a lot of doctors to start with that, and then really look at ways to really help patients out. Whether they have abnormal test results, we can really focus specific treatments on or whether we have to look at lifestyle changes.
Tanzina: Doctor, you mentioned other chronic illnesses, and I'm wondering if what we're seeing here with COVID long haulers, in particular, indicates that COVID-19 itself could become similar to a chronic illness? I'm thinking things like autoimmune issues, like lupus, or other fibromyalgia, or other things that are difficult for people to see, but that are still affecting patients.
Dr. Christian: Yes. That obviously remains to be seen as we're early in this process. You raise a really good point, is the chronicity of this, and whether it parallels other post-infection syndromes we see such as chronic fatigue or other autoimmune diseases, such as lupus, rheumatoid arthritis, or even fibromyalgia. A lot of the symptoms we're seeing really overlap very closely. That's one of the areas where we can say, "Okay, what have we done with fibromyalgia? What have we done with chronic fatigue in the past and can some of those treatments help here?" There are some unique features to this post-acute COVID phase that are very unique to COVID. I want to be distinctive with that, that it's not exactly the same as those other disease states, but there are some parallels, which could turn long-term, or this may be a distinct process from those but have enough similarities that we can overlap treatments.
Tanzina: Does the age of the person who had COVID-19 matter when it comes to who is more likely or less likely to experience long-term effects from COVID-19?
Dr. Christian: That's an interesting question. We are seeing two groups of risks. The risks for developing a post-acute COVID syndrome are really largely unknown. There are a few studies out there looking at the risks. Obviously, if you came in and had a few risks for more severe disease, diabetes, hypertension, and obesity, as an example, we know you're going to have a more severe COVID infection. That more severe infection might lead to an increased likelihood of a post-acute COVID syndrome.
There are a group of patients who are generally younger, and again, don't have any risks, and are actually having post-acute COVID syndrome. There was a study out of the UK that particularly when we looked at psychological neurological effects of COVID, they were much higher in the age groups between about 20 and 50, as they were in the age groups of 60, 70, and 80. There may be some trends, but I think we have a lot more research to do.
The NIH is putting a call out for funding in this area. Hopefully, in the next year or two, we'll have a lot more research. Not very comforting for our patients to hear it's going to be some time before we have data, but it's really important to realize that this is not age-specific, and we can't just think it's older patients who've had severe COVID. It's also young patients who are really otherwise healthy. The youngest patient I saw, I saw a patient last week was 19. It's pretty hard to see someone who's debilitated at 19 and otherwise was healthy.
Tanzina: Doctor, two final questions for you as we round up the segment here. Are there any medical treatments that you see that are promising? Finally, are those folks who were suffering from COVID long-term, are they able to apply for things like disability in the meantime?
Dr. Christian: Oh, two great questions. Treatment is a big black box right now. I think the only thing I've seen that's worked with my patients, and again, I don't have scientific data is that number one, the treatment is individualized and number two, it's involves lifestyle changes. Now, there may be specific treatments. For example, the first patient at the top of the segment here who had chest pain and shortness of breath, if we found she had some abnormalities and example had some clotting in her lungs, we could put her on a blood thinner. Those are specific treatments based on specific issues we have. Maybe her oxygen level's low, we give her oxygen. Of course, we're going to do that.
For the global syndrome, really, lifestyle changes are the only things I've seen that have helped. Again, if you need to take a nap, we take a nap. If you need to slow down your life a little bit, if there needs to be some yoga, meditation, nutrition changes, really pacing your life as it moves fast, and you now move slower in this post-illness phase, we need to do so. That raises the second question you have, which is, if you're working full-time, how do you then manage your full-time job when after two hours you have to take a nap? How do you slow your day down when you have a fast-paced job?
We see that with a lot of my co-workers in healthcare who have a post-acute COVID syndrome. Healthcare's fast-paced. We're moving in the ICU constantly, and they can't quite keep up. How do we then support them through that phase? Yes, people are able to apply for disability, but again, if you have a concrete test abnormality, it's much easier than if you have a group of symptoms that are really less specific. That's one of the challenges we have as well.
Tanzina: Dr. Sandrock one last question for you. You mentioned healthcare workers also bearing the brunt of this. How are you coping in this moment? We know that healthcare workers have also dealt with a lot.
Dr. Christian: That's also a great question. I guess I'm still alive and I'm hoping okay, but it's has been a very long year. I can easily say with many of my colleagues as well, that this has been the worst year we've had and it's extremely exhausting to not only manage the pandemic in the acute phase but to also deal with this aftermath, particularly with both our colleagues and with our patients. It's been a challenging year at best, but we're holding up okay. That's what we trained for. This is our job, it's what we signed up for. We didn't plan to do this every day, but this is, unfortunately, what we trained for, and we're proud to do it.
Tanzina: Well, we appreciate you and your colleagues out there doing this very difficult and important work. Dr. Christian Sandrock is an infectious diseases and pulmonary and critical care physician at the University of California Davis Health in Sacramento. Dr. Sandrock, thank you.
Dr. Christian: Thank you.
Christian: My name is Christian Georgioufrom South San Francisco. I had lingering symptoms from COVID for about a month after I was cleared. Mainly I was out of breath, I got tired really quick, and I had stabbing needle-like pains inside my lungs on and off. I also had some strange visual phenomena and sent me to get an eye exam. I'm pretty much back to normal now I guess, but it was pretty stressful for about a month or so.
Philip: My name is Philip [unintelligible 00:17:52]. I'm calling from Los Angeles, California. I contracted COVID on a work trip to New York City last March. My symptoms progressed to severe COVID and I was eventually intubated and placed on a ventilator for 23 days. I was in the hospital for over two months before I was released. I felt very lucky to have survived. I was told that I would make a full recovery but it's come with a lot along the way and it hasn't been easy. There are a lot of things that still remain uncertain. The first couple of months of being home from the hospital, I was in rough shape so rough in fact that I had to go and stay with a dear friend to help look after me day-to-day, stuff that came up at night. A lot of the stuff that initially came up for me was severe leg cramps, severe headaches and earaches, anxiety, PTSD, and getting fatigued and exhausted easily, and having sleep and lay down.
Jenny: This is Jenny from Lakeland, Florida. I had COVID really early last April, actually. It took me about 21 days to get back to work. It's almost a year later and I'm still experiencing after-effects. I have some days where my chest feels really tight congestion but sometimes it gets so bad that I actually bought an over-the-counter inhaler. I get short of breath pretty easily and I'm still just tired all the time.
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