E45: In for the Long-haul

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“It’s not like the straight trajectory towards recovery…It very feels very much like a one step forward, two steps back. People referred to it as the Corona coaster, because you don’t know where it’s going to take you next” —Diana Berrent

COVID “long-haulers” are people who have extended experiences with COVID symptoms that never let up, or keep recurring. The virus is so new that we do not have a clear picture of what each person’s experience with the disease will be like. In today’s episode, we are hearing from members of the Survivor Corps — a group of COVID long-haulers. Diana Berrent, Marcus Tomoff, Eli Musser, Marjorie Roberts, share their experiences with the ups and downs of relentless COVID symptoms, how the virus has impacted their life, and also their struggles with getting medical care. This podcast was created by Just Human Productions. We’re powered and distributed by Simplecast. We’re supported, in part, by listeners like you.

Diana Berrent: It’s not like the straight trajectory towards recovery that we’re used to with any sort of normal virus or flu that we’ve experienced. It feels very much like a step forward, two steps back. People referred to it as the Corona coaster.

Celine Gounder: Welcome back to “Epidemic,” the podcast about the social and public health impacts of the coronavirus. I’m your host, Dr. Celine Gounder.

Diana Berrent is a photographer living on Long Island. When the coronavirus first started to make news in the United States, she took it really seriously. Her mother is elderly, and her husband has MS.

Diana Berrent: Between the two of them I was quite concerned and had actually been taking a fair number of precautions to the point where other people thought that I was being a little, um, hysterical in my reaction.

Celine Gounder: On March 9th, Diana had a meeting with a group of eight people. Just days before, two of the people at that meeting had been at a conference in New York City. That conference turned out to be a super-spreader event.

Diana Berrent: So I was exposed on the evening of March 9th and I woke up,um, you really couldn’t script it, on Friday the 13th 2020. I mean, [laughs] almost writes itself. But, um, I woke up with every classic symptom of COVID. I had 103 fever. I had a respiratory infection. I felt like I had an elephant sitting on my chest.

Celine Gounder: Her husband, son, and daughter all got COVID. Their cases were mild. Hers … was not.

Diana Berrent: The other symptoms that I had, I had soul crushing headaches, I had deep inner ear pain, tremendous nausea, I lost, you know, 12, 15 pounds in two and a half weeks.

Celine Gounder: During this time, Diana started a Facebook group for COVID patients called Survivor Co

rps. Her initial goal was to organize people with COVID antibodies to donate plasma. And after about three weeks, Diana says she started to feel better. But things took a turn for the worse in June.

Diana Berrent:I felt like I was having almost a, you know, symptomatic relapse is the only way that I can put it.And so the GI issues came back. All of a sudden I felt like I couldn’t walk to the corner. The pain in my ears was so overwhelming that I, I couldn’t concentrate on anything. I couldn’t do anything.

Celine Gounder: There’s a name for people who have this experience with COVID. They’re called long-haulers. People whose COVID symptoms never let up or roar back.

Diana Berrent: What’s bizarre about COVID is that it can often feel like there are days when you’re just literally reaching into a shopping bag and picking out a handful of symptoms and you don’t know which ones are going to hit you that day.

Symptom montage … 

Marcus Tomoff: I woke up with no smell, no taste. 

Eli Musser: I remember at one point standing up wondering if I needed to, to vomit, to pass out or to have a panic attack and couldn’t decide which to do first. 

Marjorie Roberts: And then I started having these really scary nightmares, like I had never had before in my life. 

Celine Gounder: The SARS-CoV-2 virus is new. The people who are experiencing COVID symptoms are like Guinea pigs for this infection. We’ve never seen this virus before, so we really just don’t know how it’s going to affect people now… much less months or even years out. But when long-haulers seek help for these debilitating symptoms… some are being turned away.

Diana Barrent: They are going to the doctor complaining of this variety of medical ailments, and they’re being given antidepressants and being told that they have anxiety. And people are struggling with this with their doctors, with their families, with their employers to take what’s happening to them seriously.

Celine Gounder: In this episode we’re going to hear from some members of Survivor Corps. They’ll share what it’s like to be a long-hauler and why they’re struggling to get care…

Eli Musser: That this has to stop. We’ve, we’ve got to be able to take patients at their word.

Celine Gounder: The toll it’s taking on them …

Marcus Tomoff: People I’ve known for 10 plus years. Uh, some have told me, they hope that I die from it.

Celine Gounder: And what they’re doing about it.

Diana Barrent : We have identified what needs to happen, and we need the medical and scientific community to be on board, but we are there to  work with them hand in hand and lockstep.

Celine Gounder: Today on “Epidemic” … the long haul with COVID.

[music out]

Marjorie Roberts: My name is Dr. Marjorie Roberts. I’m 59 years old, and I’m currently heading into my sixth month of COVID-19.

Celine Gounder:Marjorie was running a hospital gift shop in Atlanta when the pandemic started. Her symptoms began in late March. She had fever, GI issues, and trouble breathing.

Marjorie Roberts: I just got really sick. And pant like a dog, and I couldn’t eat. I couldn’t sleep.

Celine Gounder: After almost two weeks of her feeling sick… on April 5th, Marjorie’s husband told her she had to go to the emergency room. When she described her symptoms, she says the doctors’ and nurses’ demeanour changed.

Marjorie Roberts: It was like, they were scared to touch me and scared to come near me.

Celine Gounder: They took her blood pressure, gave her IV fluids, a lung x-ray, an EKG… even a CT scan.

Marjorie Roberts: So they did all those tests. And then later on a nurse came in and she said, “You’re going to have to take the COVID test.”

Marjorie Roberts: So when a nurse came in, she was nervous, and I was nervous as well and she just quickly shoved this long Q-tip looking contraption up my nostril, just one side, she did it real quick.

Celine Gounder: The nurse gave Marjorie a nasal swab test. They’re designed to tell you if you have the SARS-CoV-2 virus. Marjorie’s test came back negative. The nurses told her she had a respiratory infection and should go home, stay hydrated, and ride it out.

Marjorie Roberts: So I came home that night, and I remember being so happy and just telling everybody I didn’t have COVID, and the test was negative. So from that point on, I began to get even sicker. I began to get sickwe then I had ever been in my life.

Celine Gounder: After the ER visit, she followed up with her primary care doctor. Her doctor said it was all in her head.

Marjorie Roberts: She said that I was mimicking what you seen on television, that I wasn’t sick and that I just needed to watch feel-good movies, and work jigsaw puzzles in riding it out. And I was hurt.

Celine Gounder: Marjorie didn’t get better. She was still having trouble breathing. She ended up in the Emergency Department two more times. They gave her all the same tests again… except the COVID test. And every time they sent her home.

Marjorie Roberts: So I told them, please help me, please help me because I thought I was dying… because I had the conversation with my daughter about my life insurance policy, about my will. And she’s my only daughter, so having to have that talk with her, was already scary enough because I really didn’t know at that point what was going to happen to me because I had never been so sick, nothing was working.

Celine Gounder: With the help of her daughter, Marjorie got a new primary care doctor in June, three months after she first developed her symptoms. The doctor wanted her to get another series of tests.

Marjorie Roberts: And then the next day she called me and she said, the test that they had gave me on April 5th was false. That was a false negative. She said, my numbers were all over the place. My body was all out of whack.

Celine Gounder: Marjorie had COVID… so why did her test come back negative in April? Back in April, if you didn’t need to be on a ventilator–or at the very least, on supplemental oxygen–we sent you home. We might not have tested you because tests were in short supply. We were conserving tests for patients in the hospital. And by the time Marjorie got tested with the nasal swab, the virus had left the proverbial building. But it left a big mess behind. Marjorie’s new doctor found scar tissue all over Marjorie’s lungs. And that’s why she was struggling to breathe.

Marjorie Roberts: So that’s where I am now. And, um, I just feel like if, if my, my old primary doctor had listened to me, or even had treated me with a little bit of dignity out of those three times in the emergency room. It was, it would have made all the difference.

Celine Gounder: Once Marjorie found a doctor who listened to her and took her seriously, they were able to do a scan and find what was wrong. But many COVID long-haulers are dealing with serious symptoms that tests can’t easily explain.

Eli Musser: My neurologist ordered two MRIs, a brain MRI, and a cervical spine MRI. Another set of chest x-rays, just to be sure. And again, once more, absolutely nothing in any of this, in any of these scans, tests and paperwork showed, uh, anything abnormal.

Celine Gounder: This is Eli Musser.

Eli Musser: Today is my hundred and 86 day suffering COVID symptoms. Up until the tail end of March I was a healthy, happy, uh, copywriter and musician working in New York City, about to release a record and planning to get married in June.

Celine Gounder: Eli and his finacée were living together in New York City when they both got COVID. She got sick first. She had a fever, chest pain, but never got a cough. Eli’s had a cough, difficulty breathing, and a lot of fatigue. He started to get panic attack-like symptoms at night. But a chest x-ray didn’t show any obvious signs of damage to Eli’s lungs.

Eli Musser: This was the first time I was to hear, although certainly not the last that I was just very anxious, and I needed to potentially contact, uh, a therapist to help me work through this anxiety about the breathing.

Celine Gounder: Eli’s symptoms continued… they didn’t improve but didn’t get worse either. Until…

Eli Musser: Right in the middle of April things totally started going downhill. I began sweating profusely. My temperature dropped down to 95 degrees at night. I was babbling and incoherent and various upset. I had Convulsions. I had a tremor.

Celine Gounder: The symptoms didn’t let up. No one could explain the spasms, tremors, or the shooting pain in his back… symptoms that seem to have a lot more to do with his nervous system than his lungs. One morning, in May, he woke up and couldn’t move his legs. They went back to the emergency room.

Eli Musser: I was unable to walk, physically unable to walk across the ER. There was an attending physician there who sort of rolled his eyes and said, this is just not real. This is just in your head.

Celine Gounder: How did that make you feel to be told that this does not affect the brain, to be told that you’re just anxious?

Eli Musser: It made me feel angry. It made me feel hopeless. I remember particularly the moment, that, that the attending physician said, I really should just find a therapist to talk through all this with and I sat up and I cried in that bed and I said, I just do not understand what’s going on. I just can’t believe this is real.

Celine Gounder: COVID is acquired through the respiratory system. Patients experience chest tightness, difficulty breathing, even having to go on a ventilator in extreme cases… but COVID is not limited to the lungs. It is also a disease of the blood vessels. So that means that any organ system fed by blood vessels is susceptible. The nervous systemheartkidneys, and intestines–they’re all vulnerable because of what COVID can do. Many of the symptoms appear to be caused by a dysfunctional hyperinflammatory immune system response to the coronavirus… and to blood clots. There’s a lot we still don’t know and are still learning. But, just because we don’t have a test for something, doesn’t mean it doesn’t exist.

Eli Musser: We can all respect, ‘I can’t do anything for you.’ I don’t understand what this is coming from a doctor. What we can’t understand as patients and as suffers is, I don’t think this is real. And I think it’s in less extraordinary times is egregious. And in the case of a pandemic, for some of these people is nearly unforgivable.

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OK, back to the show.

Celine Gounder: Convincing doctors and nurses their symptoms are real isn’t the only hurdle COVID long-haulers are struggling with. There is a very real emotional toll.

Marcus Tomoff: It’s one of those things that, it’s affected me extremely heavily, and every time I talk to a doctor, the doctors are just like, it’s all anxiety. You’re not really dealing with this. You’ll get better over time. But I’m dealing with consistent pains every day that I don’t know if they’ll get better or not.

Celine Gounder: This is Marcus Tomoff. He’s 28 and lives in Tampa, Florida.

Marcus Tomoff: I’m used to doing flips off of my cousins dock out in Madeira beach, to now I can barely walk around without getting winded, very dizzy. It, it’s changed my entire world.

Celine Gounder: That change happened in June.

Marcus Tomoff: Uh, June 8th was when I woke up with no smell, no taste. Kind of like a metal taste in my mouth.

Celine Gounder: Marcus got COVID right before the wave of cases crested in Florida over the summer. He said initially he felt some guilt about his diagnosis.

Marcus Tomoff: When I first got sick, I knew there was a chance that I probably gave it to my mom and my stepdad. And then they ended up getting sick about a few days later, but all that guilt set in, depression.

Celine Gounder: Marcus had been working as a nightclub promoter right before he got sick.

Marcus Tomoff: Doing this club stuff makes me happier more than you would ever know [laughs].

Celine Gounder: But that lifestyle also meant he had just been with a group of people a few days before he got his first symptoms. He decided to go public about his diagnosis on social media.

Marcus Tomoff: I felt that someone needed to say something, and I got both ends of it.

Celine Gounder: The post started to snowball.

Marcus Tomoff: People first started sending me messages by, by the fifties, two hundreds.

Celine Gounder: People Marcus had known for years shunned him. He says he even got death threats.

Marcus Tomoff: I thought people were going to start coming to my house. A lot of people know where I live so I assumed, like a lot of people were going to come after me.

Celine Gounder: He got depressed. His anxiety spiked.

Marcus Tomoff:  I’ve had a lot of suicidal ideas and tendencies during this. Just about four, four days ago, I had to have the police involved. Um, I had to have an emergency therapist come on board to talk to me about not trying to hurt myself or kill myself.

Celine Gounder: On top of these challenges to his mental health, Marcus was still dealing with symptoms of long COVID. He’d lost 20 lbs from diarrhea, nausea, and vomiting. In July he went to the emergency room twice in five days. Like Eli, he struggled to walk. The ER doctors said there was nothing wrong with him. And again, like Eli, they told him it was all in his head.

Marcus Tomoff: And since then, everything has been worse. I sound fine right now, but I’m struggling to breathe. My O2 levels go down very quickly. My shooting pain from my neck down my back to my legs is affecting me walking. My heart rate jumps from easily, the nineties to 100, still one third to one fifties.

Celine Gounder: Some physicians have told Marcus he may have myocarditis, which is inflammation of the heart muscle. This is often caused by a virus, like the coronavirus. Myocarditis can cause chest pain, an abnormal heartbeat, and shortness of breath. He may also have micro-thromboses, which are tiny blood clots. If these are in his heart or lungs, they could contribute to his shortness of breath or elevated heart rate.

Struggling through these symptoms is bad enough, but it’s even worse when medical professionals and family don’t believe you. Survivor Corps has been a lifeline for the people we spoke to in this episode. Here’s Diana Berrent again.

Diana Berrent: We have somehow created a little corner of the internet that is not so little anymore. Over 100,000 strangers having what is essentially the most civil, supportive and compassionate conversation in America.

Celine Gounder: When Diana started Survivor Corps, her goal was to organize COVID survivors to donate plasma for possible therapeutic use. But the group has evolved into something bigger than that.

Diana Berrent: In many ways we have also turned into a patient advocacy group because we’ve had to. So Survivor Corps has in many ways been the sort of the canary in the COVID coal mine from the beginning. Because we came into existence so early on in the COVID cycle, we have been capturing people’s real life experiences in real time.

Celine Gounder: They’ve partnered with organizations like Indiana University to track long haulers’ symptoms by looking at what people are posting in the group. The Facebook group has also been a recruitment point for COVID long-haulers to participate in scientific research, including their treatment by the medical establishment. And there are a lot of concerns about what is coming for these long-haulers. Many people, like Marjorie Roberts, who we spoke with at the top of the show, had a difficult time getting a test that showed they had COVID. Others were told not to get tested at all. But it’s critical to have proof of a SARS-CoV-2 infection. Not having those test results may prevent someone from getting into specialized post-COVID treatment centers. For people like Eli and Marcus, who’ve been unable to work, it can be a barrier to health insurance.

Diana Berrent: And if you have not been able to go back to work, how are you covered by insurance? How is disability going to cover you when you can’t prove that you actually had COVID other than through a clinical diagnosis? We have members who are literally setting up GoFund Me’s so that they can pay for their appointments with specialists who might or might not be able to help them at the end of the day.

Celine Gounder: COVID could be a barrier to health insurance in another way… if the Affordable Care Act is overturned by the Supreme Court… and with it… protections for pre-existing conditions. The sheer scope of the problem has Diana worried.

Diana Berrent: We might need a 9/11 type funds set up. We might need some sort of alternative social security system set up. We are looking at what could likely be the largest group of young, disabled Americans in history, and that includes wartime.

Celine Gounder: And at this recording, that war has claimed the lives of more than 207,000 Americans. This Sunday, October 4th, there is going to be a National COVID-19 Remembrance Day in Washington, D.C. There won’t be crowds or a march, but there will be speakers representing healthcare, and other essential workers, businesses affected by the pandemic, and those who’ve died. Diana’s going to be there to represent COVID survivors.

Diana Berrent: Because we as a nation have not had a time to come together to more, not even on a personal level. Um, we haven’t been able to have funerals. We haven’t been able to, to mourn together. We haven’t been able to be together. Um, so this is a way of, you know, a little bit in person, but mostly virtually, coming together to do that.

Celine Gounder: We’re living through one of the most divisive times in American history. But groups like Survivor Corps give us a look at what can happen when people rally around a common cause.

Diana Berrent: This is truly the most diverse group of people in America. The only thing that they have in common is that they all caught the most contagious virus of our, you know, of our lifetime.There’s nothing else that binds them other than this experience, but having one another has been a, truly a lifesaver for so many of them.

Many COVID long-haulers like some of our guests in this episode are suffering from depression and suicidal thoughts. If you or someone you know is thinking of hurting themselves, please contact the National Suicide Prevention Lifeline at 1-800-273-8255. That’s 1-800-273-8255. You can also get help through suicidepreventionlifeline.org. Again, that’s suicidepreventionlifeline.org.

“Epidemic” is brought to you by Just Human Productions. We’re funded in part by listeners like you. We’re powered and distributed by Simplecast.

Today’s episode was produced by Zach Dyer and me. Our music is by the Blue Dot Sessions. Our interns are Tabata Gordillo, Annabel Chen, and Bryan Chen.

Special thanks to Shelby Hedgecock and Jessica Robinson. The music you’re hearing is Smile (cause somebody loves you) from Eli Musser’s album. You can find it on iTunes, Amazon Music, and Spotify.

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And check out our sister podcast “American Diagnosis.” You can find it wherever you listen to podcasts or at americandiagnosis.fm. On “American Diagnosis,” we cover some of the biggest public health challenges affecting the nation today. In Season 1, we covered youth and mental health; in season 2, the opioid overdose crisis; and in season 3, gun violence in America.

I’m Dr. Celine Gounder. Thanks for listening to “Epidemic.”

Guests
Diana Berrent Diana Berrent
Eli Musser Eli Musser
Marcus Tomoff Marcus Tomoff
Marjorie Roberts Marjorie Roberts
Host
Dr. Celine Gounder Dr. Celine Gounder