Who Am I With Long COVID?

Kaelyn Lynch

I was on this trip with my mom in Scotland. Um, we went to the Isle of Skye, which is this beautiful, um, you know, island off the coast of Scotland. Our very last day on the Isle of Skye, I decided that I really, really wanted to do this hike. 

[Theme Music]

Kaelyn Lynch 

You know, it’s only four miles, which for me would be considered, you know, cake.

Robert Pease (host)

Or this would have been an easy hike for our protagonist in this episode, Kaelyn Lynch, just a few years ago. But that was before facing far steeper challenge of a new and confounding chronic illness

Kaelyn Lynch 

So I did this hike of this beautiful mountain overlooking a loch.You know, I was looking at my heart rate the whole time. It wasn’t anything crazy. And I remember standing on top of that, uh, that mountain and thinking, ‘All right, I’m back. I’m gonna be better. I’m gonna get better. It’s gonna be fine.’

Robert Pease (host)

But like so many with long COVID, it wasn’t fine. 

Kaelyn Lynch

And less than a week later, I ended up in the hospital. And at the time I just remember thinking, I was like, ‘Just leave me here and let me die’. Like, I just, I felt so awful.

[Theme Music]

Robert Pease (host)

This is My Body Odyssey, a show about the rewards and challenges of an active lifestyle. I’m Robert Pease. And the story we often tell on My Body Odyssey is about the overall benefits of physical activity, despite the difficulties of exercising with conditions like Diabetes and cancer and Parkinsons. But today’s show is an exception to that rule, as we’ll hear from Kaelyn Lynch and our expert this episode, Dr. David Putrino, Director of Rehabilitation Innovation at Mt Sinai Medical Center in New York. Putrino’s team has worked with thousands of long Covid patients, including marathoners and high level athletes who can now barely produce enough energy to get out of bed.

Dr. David Putrino

You don’t fix that by putting them on a treadmill and saying, no pain, no gain.

Robert Pease (host)

In fact, this episode is like our kryptonite here at My Body Odyssey because any activity with cardio and respiratory demands is so often the trigger for severe setbacks for those with lLong COVID. And that turns life upside down for someone like Kaelyn who’s long thrived on physical challenges.   

[Theme Music] 

Kaelyn Lynch

Do you want me to like introduce myself, give an intro line or anything like that?

Robert Pease (host)

Sure. 

Kaelyn Lynch

Okay. My name is Kaelyn Lynch. I am a journalist and filmmaker and I have Long COVID and I’ve been dealing with that for about ten and a half months now. I was always super active when I was a kid; played sports all throughout my childhood, mostly basketball, but I did track and cross country, softball, soccer, everything. As I got older, I was going on, you know, 40 mile solo backpacking trips. Um, I was doing whitewater rafting, mountain biking, played roller derby. 

Robert Pease (host)

It’s a formidable list, maybe even a little intimidating. Kaelyn by nature is one of those people who can’t stop moving–or who couldn’t stop moving, who packed all that she could into every day. 

Kaelyn Lynch

So I was, you know, going all the time and constantly pushing myself. 

Robert Pease (host)

Well, we would expect nothing less from someone who has participated in roller derby. 

Kaelyn Lynch 

It was a sport that combined my two favorite things, which were hitting something and going fast. But I think it, um, especially with Long COVID, eventually ended up hurting me, um, you know, in the end.

CONTRACTING LONG COVID

Robert Pease (host)

So, uh, tell us where you were when Covid hit. You know, when you first experienced the symptoms. 

Kaelyn Lynch

Yeah. So I, uh, I was living in Santa Fe, New Mexico in 2020 when COVID hit. I managed to avoid getting it for the first two years. 

Robert Pease (host)

Kaelyn and her roommate masked everywhere, they tested regularly. They were meticulous and followed all the strictest guidelines, because that’s just what you were supposed to do. But Kaelyn wasn’t actually all that worried about an initial case of COVID.

Kaelyn Lynch

I remember actually saying to my roommate, you know, ‘I’m not necessarily afraid of getting COVID; I’m young, I’m super healthy, I’m fit. But I’m afraid of getting Long COVID.’And then, you know, we did start to ease up a bit. I think like most people, um, after about two years of that, you know, we were like, ‘Okay, we’ve gotta try to live with this now.’ And, and that’s when, you know, we ended up getting sick.

Robert Pease (host)

Kaelyn first got COVID in April 2022. It was pretty run of the mill: fatigue, stomach issues, a fairly mild case.

Kaelyn Lynch 

I think I did notice some lingering effects after that where I would go to roller derby practice and I would, you know, if I would skate too hard, I would feel a little sick, I’d feel a little nauseous or a little dizzy.

Robert Pease (host)

But after a month, all of those symptoms had disappeared. 

Kaelyn Lynch 

And about six weeks later, a little bit less than six weeks later, I tested positive again. And at the time, everyone thought that was impossible. Everyone that I talked to said, ‘That’s not possible, you have some immunity to it.’ I even called the kind of New Mexico Department of Health hotline, and said, ‘Hey, I, I think I have another COVID infection, but I don’t, didn’t think that was possible. Are you guys seeing this?’ And the person on the phone actually told me, ‘No, no. If you just had it, there’s no way that you have it again.’

Robert Pease (host)

Kaelyn’s second case of COVID was a lot worse: fever, chills, she was bed-ridden for several days.

Kaelyn Lynch

I was actually having dreams that I was drowning. And I was waking up in the middle of the night feeling like I couldn’t breathe. 

Robert Pease (host)

Kaelyn went to the doctor. She got a prescription for Paxlovid, which seemed to help, and soon she was back on her feet. But she had some vague lingering symptoms, like shortness of breath and fatigue…

Kaelyn Lynch

Like my chest hurt. My resting heart rate was around 60, 65, and my heart rate would jump up to 150, 160, just going for like a very leisurely walk.

Robert Pease (host)

Overall, though, she was feeling much better– or thought she was feeling better. Which was good timing, because Kaelyn had planned a big trip to Europe with her mom. First Scotland, then Portugal. Her first trip after years of COVID lockdowns and restrictions. 

Kaelyn Lynch 

I said, you know, I’m going, I’ll be fine. I’ll go on this trip, but I’ll just, yeah, I’ll just relax. It’s not gonna be like a very strenuous trip. Like, we’re not gonna be doing anything crazy. We’ll just take it easy. But I think my definition of taking it easy is a little different than a lot of people’s definition of taking it easy. 

EUROTRIP – FIRST SIGNS OF LONG COVID

Robert Pease (host)

Kaelyn flew to Scotland with her mom. They went to the Isle of Skye, a rugged island of meadows, cliffs and lakes. 

Kaelyn Lynch

And, uh, there’s some beautiful hiking on the Isle of Skye. And I was frustrated that I felt like I shouldn’t do any of it because I was supposed to be taking it easy. And so our very last day on the Isle of Skye, I decided that I really, really wanted to do this, this just a hike. And I thought, yeah, this four mile hike will be fine. I’m back. I’m gonna get better. It’s gonna be fine. 

Robert Pease (host)

After the hike, Kaelyn crashed. She was exhausted, nauseous. She felt slow and heavy and dizzy. 

Kaelyn Lynch 

I went to the hotel and laid down for a few hours. And that’s kind of all I could do. It was like just a really all-encompassing exhaustion.

Robert Pease (host)

Kaelyn managed to push through that fatigue, like she always had. But it was the next leg of her trip where she really hit a brick wall. In Portugal, traveling with friends. 

Kaelyn Lynch

Um, they were going into shops and stuff, and I was sitting outside, kind of with my head between my legs. I, my heart rate was very high, my legs felt leaden. It felt almost like I was wearing like a lead suit of armor.

Robert Pease (host) 

We wondered how typical Kaelyn’s experience was for Long COVID patients and reached out to Dr. David Putrino at Mt. Sinai.

Dr. David Putrino

Uh, very common. You know, we frequently see individuals who are experiencing multi-organ issues. And that description that we just heard was really classic for a lot of individuals. I’ve lost count of the number of people who come to me saying, ‘This isn’t right, I run marathons. This isn’t right, I climb mountains.’ And now they’re struggling to get out of bed in the morning. 

Robert Pease (host)

By the time Kaelyn’s friends got her to the hospital in Portugal, she could no longer walk. And she was almost non-responsive. 

Kaelyn Lynch  

And I started noticing that I was very mentally slow too. Like, I was trying to explain to my friends what was going on, and I couldn’t find the words. It was almost like thinking through mud is kind of how I described it. 

Robert Pease (host)

The doctors ran some tests. They did a chest x-ray. But everything looked normal. 

Kaelyn Lynch

And they were like, ‘Everything’s fine. We don’t know what’s wrong with you.’ And I just laid down. And after about eight hours of laying down, I felt well enough that I could get up and walk out of the hospital. 

Robert Pease (host)

Another insidious aspect of Long COVID is that it can be difficult to identify from routine test results. And, as in Kaelyn’s case, that’s prevented many doctors from diagnosing the condition. Again, Dr. Putrino 

Dr. David Putrino

First and foremost, you know, the sort of working definition for Long COVID that we tend to use in the clinic is basically, boiling it all down, says, if you had acute COVID infection and it’s been around three months and you’re not feeling like you were before you had that acute infection, that’s Long COVID. What needs to be, you know, repeated over and over and over again to clinicians, is that both the World Health Organization and the CDC do not and have not ever required any objective testing for a diagnosis of Long COVID.

Robert Pease (host) 

There are credible estimates that between 7 and 23 million Americans have been affected by Long COVID to date, though not all diagnosed. Worldwide there’s been at least 65 million cases, with millions more likely to develop from new variants and seasonal outbreaks. 

Dr. David Putrino

When I say it’s quite easy to diagnose Long COVID, what I mean by it, is it’s quite easy when you just listen to your patient. When someone is rolling into your clinic and saying, ‘I feel really unwell. I can’t get back to my pre COVID life, and I’m really struggling.’ We know that it’s a real condition. We know what the clinical case definition is according to the CDC. That should be all we really need in order to make the diagnosis. And it’s a shame people are still struggling to get that diagnosis. 

BACK IN THE U.S. – GRAPPLING WITH LONG COVID

Robert Pease (host)

Kaelyn didn’t know it then, but that stint in the hospital was the beginning of a struggle with Long COVID that would completely upend her life. 

Kaelyn Lynch

So I was able to, you know, fly back to the U.S. I was well enough to do that. And then when I got back, um, I was staying with my parents and I just kept getting kind of progressively worse. The first three or four months, I was typically in bed somewhere between like 18 to 20 hours a day. Um, either in bed or on the couch laying down. Even reading a book or listening to a podcast or, um, trying to focus on doing something like writing a check for a few minutes would, uh, completely crash me.

Robert Pease (host)

Kaelyn couldn’t live on her own, she was dealing with all kinds of strange symptoms, had to move back in with her parents. She noticed that when she was talking to her parents and others, she would often interject a random word that made no sense.

Kaelyn Lynch

I don’t know. I would try to say ‘divide’ and instead I would say ‘dog’. It’s called expressive aphasia, I learned later.

Robert Pease (host) 

She struggled with all kinds of basic tasks. 

Kaelyn Lynch

I bought a shower chair and would use a shower chair to sit down while I showered and that would help. But for a while, I would maybe be able to shower once a week. But I would have to kind of rest before I would take a shower, and rest after I took a shower for a few hours. 

Robert Pease (host) 

But the most unsettling part of all of these symptoms was that after weeks and months, they weren’t going away. 

Kaelyn Lynch

I think there’s something wrong with me. I think I might have Long COVID.

Robert Pease (host)

Kaelyn reached out to a friend that she knew was dealing with Long COVID… 

Kaelyn Lynch

And his advice to me was: rest as aggressively as you possibly can. If you can manage not to work, don’t work. Don’t exercise. 

Robert Pease (host) 

And were you able to do that, or did you have like these sort of better days or better moments where you feel like, ‘Well, now I can do something’?

Kaelyn Lynch

Yeah, I was stubborn.  

LONG COVID AND EXERCISE

Robert Pease (host)

The fact is, Kaelyn was still in something like denial at this point. Not about having Long COVID, but about the severity of it. And what that meant for her identity and lifestyle. Because on days when she did feel better, Kaelyn would still go to the gym for a light workout.

Kaelyn Lynch

So I was in the gym and I was doing some of these more like recumbent kind of laying down exercises. So, you know, things like leg lifts, bridges. And I decided, you know, I, I can do squats. So I’m like, I’ll just, I’ll just lift really light So for me that was like, I’ll do 80 pounds, you know. And then I just kind of kept going and adding weight a little bit; a little bit more, a little bit more. And I was like, ‘Yeah, it’s fine. Like, I’m, I’m feeling okay. I feel fine, I’m a little dizzy, but it’s okay.’ But I got up to the point where I was pretty close to my kind of old PR weight. And I did one squat at my old weight and immediately you know, I put the weight down and my feet were completely numb and I was like, ‘Oh, that’s not good.’

Robert Pease (host) 

Kaelyn made it home through spells of dizziness and nausea, and spent the next three days in bed. 

Kaelyn Lynch

I could barely eat, I could barely talk. My mom had to literally like bring me sandwiches and had to bring me, you know, make me food and kind of like, almost, you know, force me to, to drink water and to, to eat. And I think that was kind of the point where I said like, ‘Okay, this is real. Like this is really happening to me.’

Robert Pease (host) 

We asked Dr. Putrino about the severe setbacks caused by exercise for Long COVID patients. It’s often called post exertional malaise, such as occurred with Kaelyn in the weight room.

Dr. David Putrino

People who are in peak physical condition, not that it matters whether or not you’re in peak physical condition prior to getting COVID, but I think that these people are a good example. They got sick for four or five days and then they could not tolerate any form of aerobic exercise. Now that is not, you know, deconditioning. What we’re starting to see, and we’re, you know, running a lot of studies to understand this, is we see mitochondrial dysfunction in these people. So there is an inability for their cells to produce energy the way that it used to.

Robert Pease (host) 

Dr. Putrino’s group at Mt Sinai has benefited from collaboration with experts on other chronic conditions like Lyme Disease and Chronic Fatigue Syndrome who have been observing similar symptoms for decades. 

Dr. David Putrino

You don’t fix that by putting them on a treadmill and saying, ‘No pain, no gain.’ You in fact run the risk of making them much, much worse if you try and fix an energy production problem, a cellular energy production problem, by smashing them up against the wall and hoping for the best.

Robert Pease (host) 

Well do you think that part of this process is kind of changing your identity of someone that was, you know, a roller derby veteran that could push through things, and develop a new identity. And you know, what is that new identity and are you comfortable with it now?

Kaelyn Lynch

Yeah, that’s a really good question. That has been one of the hardest parts for me, and I think for a lot of people. I have always been someone that very much defines myself by the things that I do. And all of my coping mechanisms as well were all wrapped up in that; you know, when I was having a bad day, I would hit my punching bag. When I needed to get out of my head, I would go for a walk. And suddenly I couldn’t do any of that. And I’m still trying to answer the question of, ‘Who am I when I can’t do any of the things that I enjoy?’ And I don’t have an answer yet. 

LONG COVID AND POTS (POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME) 

Robert Pease (host)

Kaelyn was realizing she needed help. So she went to see her primary care doctor, which didn’t turn out to be all that helpful.

Kaelyn Lynch

The second that I mentioned that it had a COVID infection, she said, ‘Oh, well, if it’s Long COVID then there’s nothing I could do about that. I have no idea what to tell you. There’s nothing I can really do to help you.’ And so at that point I said, ‘Okay. I need to figure out what doctors to see about this because I can’t go to just any doctor.’

Robert Pease (host)  

In the rare moments where Kaelyn wasn’t laid up, she spent all of her energy seeking out possible treatments.  

Kaelyn Lynch

So I called every single long covid clinic in New York and tried to get an appointment. And some appointments were like a year out.

Robert Pease (host) 

While Kaelyn the patient waited to get doctors’ appointments, Kaelyn the journalist started doing her own research. She found forums where other people with Long COVID were talking and sharing and experimenting. 

Kaelyn Lynch

I found lists of supplements people were taking. And anything that was like, relatively low risk, I was trying it. Because I said, ‘Why not? You know, I will try anything at this point to get better.’

Robert Pease (host) 

Kaelyn found a cardiologist who treated people with Long COVID. And despite the long waitlist, she managed to slip in a visit on a cancellation. 

Kaelyn Lynch

And she recognized that I almost definitely had POTS.

Robert Pease (host)

POTS is a post-viral illness. It stands for Postural Orthostatic Tachycardia Syndrome – a condition that occurs after a viral infection. People with POTS can have dizziness, fatigue and high heart rate. It can actually make them pass out from standing up too quickly. 

Kaelyn Lynch

So there’s been quite a few papers that have come out about Long COVID and how it can cause these other post viral illnesses. So these two kind of most common post viral illnesses that are seemingly caused by Long COVID (and I should say that these post viral illnesses, like POTS, have been around forever). But the difference is now that a bunch of people got sick with a virus all at once. So now we’re seeing all of a sudden all these people, this kind of flood of people, that are developing these post viral illnesses, even though they’ve been around for a long time. 

Robert Pease (host)

The point here is that what we commonly think of as Long COVID may actually be an umbrella term that includes other post-viral illnesses like POTS and CFS or Chronic Fatigue Syndrome that are triggered by COVID.

Kaelyn Lynch

It’s basically just the catalyst for these other post viral illnesses, is the thought, the kind of running theory. So Long COVID is new in some ways, but it’s also not new. 

Robert Pease (host) 

Now that Kaelyn was diagnosed with POTS, there were at least some protocols she could try for her POTS symptoms. 

Kaelyn Lynch

Taking salt tablets, um, drinking a lot of water, wearing compression garments, elevating my feet, et cetera, et cetera. And part of what makes it so hard to treat is that there are so many different manifestations of it. There are so many different phenotypes and there’s not gonna just be one blanket treatment that works for everyone, in all likelihood, with Long COVID.

Dr. David Putrino 

Every time a new Long COVID patient comes to us, we start to really interrogate every organ system we can think of to try and understand what’s going on.

REPORTING ON LONG COVID

Kaelyn Lynch

Honestly, my first initial instinct was, ‘Okay, other people need to know about this. I need to start writing about this. I need to start posting videos about this.’ People need to know what’s going on, and they need to know that this can happen to anyone. 

Robert Pease (host)

Kaelyn started to find others online who were dealing with the same thing.

Malcom

It’s just like, my legs just start getting super heavy.  

Robert Pease (host) 

Malcolm is a former professional basketball player who now can barely walk to the corner for a bagel. 

Malcolm

My heart rate starts going up, my head starts getting tight and I’m like, ‘Damn I can’t make it.’ And I just head back home. And it’s like four blocks away from me. I was just saying this the other day: it’s like somebody just shot you with a tranquilizer dart. 

Robert Pease (host) 

Kaelyn interviewed another woman, let’s call her Rachel, who had also used exercise as her main way to cope with stress. 

Kaelyn Lynch

She had a lot of very similar symptoms to me. She has POTS, she was experiencing post exertional malaise. And, you know, we talked about how going through this kind of process of grief and trying to adapt your life and trying to like, push through it and believe that like, somehow you’re just gonna, you know, you’re gonna get better. Like you’re gonna wake up one day and get better. 

LIVING WITH LONG COVID

Robert Pease (host) 

After six to eight months of struggling with Long COVID, Kaelyn started to have more good days. It was slow-going, but she did start to see improvement. 

Kaelyn Lynch

Once I started learning about pacing -which is kind of alternating periods of exertion with periods of rest- and um, you know, what’s referred to as an energy envelope. So basically, knowing where your limits are of kind of what is going to cause you to crash or over exert yourself and what you can do without over exerting yourself.

Robert Pease (host)

With practice, Kaelyn learned to read the signs of an impending crash: dizziness, nausea, and cold feet. Any of these could mean she was straying outside that energy envelope. 

Kaelyn Lynch

It just completely takes everything that you know about movement and completely flips it on its head. It’s a real kind of unlearning process, and one that I’m still going through, because I still try to push it sometimes because I don’t wanna believe it.

Kaelyn Lynch

I’ve slowly kind of progressed to the point where I can now take care of myself. I moved out of my parents’ house in March. So I’m now living independently again. I’m able to, for the most part, cook and clean for myself. I’m able to shower, um, even though sometimes I still have to sit down when I shower. 

Robert Pease (host) 

It’s been a year since Kaelyn got Covid the second time, derailing her life in so many ways. Big plans were dashed, hopes and dreams put on hold. Although sports like roller derby or crossfit are still way out of the question, there are certain things Kaelyn can do now. 

Kaelyn Lynch

Like even just going for like a nice slow walk in nature, that don’t crash me and might make me feel a little bit worse, but not too bad. Or might not make me feel worse at all, and might really help mentally, especially getting out in nature and, you know, looking at birds or grass or trees or leaves and having to go slow and notice those things.

Robert Pease (host) 

Not everyone has made even this modest amount of progress that Kaelyn has. There’s many millions that’re fully incapacitated by Long COVID. But Dr. Putrino does express some cautious optimism that treatments are becoming more effective. 

Dr. David Putrino

The only thing I would say, which I hope is encouraging, is to all the people with Long COVID and other infection associated chronic illnesses: we are working as fast as we can. We are learning new things every day. The recommendations I make to patients now are so different from the recommendations I was making six months ago. So bear with us, and I promise that we’ve got more information coming soon.

Robert Pease (host) 

The surprising part of Kaelyn’s odyssey, as difficult as it has been, after all her research and reporting on the topic, she considers herself lucky. There are so many others she has interviewed that have it worse than her. And many others don’t have the family support that Kaelyn has. 

Kaelyn Lynch

I can’t imagine people who were sick with this or are sick with it, um, that are, you know, trying to live on their own and that don’t have people around them supporting them. It’s um, I actually feel as hard as it’s been, I feel incredibly lucky in the situation that I’m in, personally. 

[Theme Music]

Robert Pease (host) 

Kaelyn Lynch is working on a documentary film about Long COVID. If you want to get in touch with her or learn more, you can go to kaelynlynch.com. That’s K-A-E-L-Y-N L-Y-N-C-H.com. You should also read Kaelyn’s great feature for National Geographic on Long COVID. We’ve linked in our show notes, along with the many groups working to publicize and organize around this tough condition. Chronic illnesses like Long COVID can demand a shift in identity, as we learned this episode. Next episode we’ll hear that years of painful injuries can do the same. We first met Mark at an Ultimate Disc tournament in 2019:

Mark

Yeah, so when I first started playing the sport, people would like, see me get hurt on the field, and they would say, ‘Oh no, like he can’t go back on. This is horrible. This is horrible, right?’ Over time, I kind of just developed this personna as the person who will get hurt multiple times per game.

Robert Pease 

Fast forward nearly four years and we speak with Ultimate Mark again, this time on the soccer field. He’s gone back to the sport he played in high school, before a major spinal fusion. And very strategically, back to the goalie position where he now hopes to avoid those ‘Ultimate Mark’ injuries. 

Mark

So, the soccer community I play with here, they don’t know that persona. They have not seen it. I haven’t really had any major injuries, knock on wood, you know, over the last year and a half or two years I’ve been playing here. So they, they have not seen that persona

Robert Pease (host) 

Post-Ultimate Mark, next episode: The physical benefits of not being injured, but the psychological challenge of changing athletic identity and community. If you have an odyssey of your own, or know of one that might resonate on the airwaves, please reach out via social media or our website, mybodyodyssey.com. This is Robert Pease for the whole team here, with special thanks to Kaelyn Lynch for sharing her story honestly and eloquently. And to Dr. David Putrino for his expert insights. Please keep an eye out for a bonus episode with Dr. Putrino coming soon. My Body Odyssey  is a Fluent Knowledge production. Original music by Ryan Adair Rooney.