Liza Fisher: Long COVID

Harlan Krumholz: Welcome to Health & Veritas. I’m Harlan Krumholz.

Howard Forman: And I’m Howard Forman. We’re physicians and professors at Yale University. We’re trying to get closer to the truth about health and healthcare.

Harlan Krumholz: Today we’re going to be talking with Liza Fisher, a woman from Texas who’s been on an 18-month medical odyssey since being diagnosed with COVID in June 2020. We usually talk about something in the health news, but this week we’re going to just go straight to talk about a pre-print that I was part of, and actually Liza was part of, that focused on the experience of people with long COVID. Long COVID is a manifestation of COVID that just doesn’t end. Sometimes people have a hiatus between long COVID and then the manifestations of downstream symptoms. Sometimes the symptoms never end, and then they change over time. And Liza is an example of someone who got sick with COVID, previously living a very healthy lifestyle, and the journey has never ended.

Howard Forman: So, Harlan, you mentioned that this was a “pre-print.” You want to tell our audience a little about what a pre-print is?

Harlan Krumholz: Yeah. So first of all, a pre-print is a study usually that has been posted publicly prior to being published in what we call peer review journal. So the large-scale way that academics disseminate their research is to submit them to scientific journals. So scientific journals undergo a process that requires them to send it out to peers, to other scientists who weigh in and pass judgments, and then if the journal remains interested, they’ll come back to the author, ask them to respond to the comments, and it’ll go through this process, which will ultimately lead to either acceptance or rejection of manuscript. Now this can take six months; it can take a year; honest to goodness, it sometimes can take more than that, and while all that’s going on, there would be good interchange between scientists or even the public to talk about ongoing research and progress. A pre-print is that opportunity. As it’s winding its way through the peer review process, or while the scientist is polishing up the manuscript further, they’re seeking to share it.

And so for us, we had done a study with patient groups to try to distill the experiences of people with long COVID who particularly had been experiencing a manifestation of internal tremors and vibrations, a really kind of unusual set of symptoms, and rather than wait till we’ve found our way all the way through the peer review process, which we are also going to pursue, we wanted to share it immediately for open comment in the community. And so we posted it on a pre-print server med archive. Anyone can find this; if they search my name, it’ll come up. It’s one of the pre-prints that’s been posted there.

Howard Forman: And I want to point out this paper is a multi-institutional, multidisciplinary paper, including a patient who everybody will come to know well and led by one of our former undergrads.

Harlan Krumholz: Well, this is a, I think a remarkable paper for all those reasons, but also because the idea from the paper actually came from patients and from patient groups. So Survivor Corps, which we’ll talk more about over the course of this session, a group that’s been convening on Facebook, a large number of people, over 160,000 people with interest in COVID, and out of that group and out of polls that they ran on that group came a recognition that there were some people who were experiencing a very strange set of symptoms, these internal vibrations and tremors. And so the idea came about to study it more intently. And it was even more than that. There was one person, a woman by the name of Heidi, who was a Hollywood writer and a very successful person who suddenly through the course of COVID became remarkably incapacitated, and this was a big part of her symptom complex, and tragically took her own life because she couldn’t see a way clear to get rid of these symptoms and to live a life with them. And her husband sought to figure out whether there was any way to help other people who might be similarly afflicted. And so, as a result, this idea was sort of put together between researchers, patients, the patient groups, and the notion was to collect information from people who were suffering like this, try to identify what’s common among it. How do people describe it? What are the manifestations of this?

Howard Forman: How has this paper been received by the medical and lay community?

Harlan Krumholz: Well, it’s really, I think, been a bit game-changing. What we did was, we employed high-level qualitative research methods. So we took this information, and we used our usual scientific approach to try to distill themes from what came out. And we really began to understand better that there is likely a cluster of people who are devastated by this set of symptoms.

For example, we put quotes in this pre-print, and for example, this was one, something somebody said: “Sometimes my entire body feels like it’s humming and trembling. It’s like I’m sitting on a huge speaker with the volume all the way up. Through the progression of the last few months, the complete body humming has slowed down, but it still happens five to eight times a month.” Another person—and again, these people didn’t share notes; they each put forth what they were thinking about—another person said, “Internal vibrations started about three weeks after my COVID. They started in my back and the back of my upper thighs. It felt like I was sitting on a vibration massage chair.” And so as we’re starting to hear these things and distill them out, we say, “Well, here’s, thematically, people are seemingly talking about the same experience. We in medicine, we don’t know the mechanism of this. We don’t know how to treat it well, but it all starts with the initial recognition.” So what we were able to do in this pre-print was to give voice to people out there who are suffering and to help organize the information they were providing in a way that the medical community could ingest it and understand it better. But really, it was the real people who made this possible, were all those who were willing to share their stories, like our guest today. And she, by the way: co-author on this piece.

Howard Forman: Yeah, I noticed that. And I just wanted to say, what you’ve done here is not only advancing the knowledge and understanding for long COVID, but I think you’re presenting the public and the scientific and medical community with a way of thinking about a lot of other rare diseases and how to think about them and how to source information on them. So it’s a real unique approach, and kudos to you and the entire team for being able to do this.

Harlan Krumholz: And Howie, you’re exactly right. This has lots of connections with a lot of other diseases that remain medical mysteries, communities of patients who are out in the wild, that don’t fit in any pattern that we’ve really understand; the mechanisms elude us. If this works here, we might be able to apply this similar approach to them as well.

And now I have the great pleasure of introducing Liza Fisher, who was a co-author on the pre-print, who’s actually coming to us from her cardiology office and has spoken out eloquently about this study and about her experience with long COVID and has much to teach us about what it’s like and what’s been the reception within the medical community. So really, really pleased to have Liza join us today. Welcome, Liza.

Liza Fisher: Thank you for having me.

Harlan Krumholz: Maybe we could just start, I always like to just start like this by having you maybe share with the audience a little bit about yourself and particularly before you came down with COVID. I mean, what was your life like? What kind of life were you living? Tell us a little bit about who you are.

Liza Fisher: Yes. Liza Fisher and I’m 38. I live in Houston, Texas. And pre-COVID, let’s see, I was 36 when I contracted COVID. Pre-COVID, I was a full-time flight attendant, part-time yoga instructor. I worked in the private industry, and so I was traveling mostly international. I did a lot of fun stuff. I work with sports teams, VIP clients. It was not unheard of for me to be at a Christmas market and then sand surfing in Dubai and then being able to float the rivers and the shopping markets in Thailand. So I’ve had a lot of really wonderful experiences in my life and very active lifestyle.

Harlan Krumholz: You making me jealous! But let’s say, fair to say that you were very healthy and very active. That sounds like it, right?

Liza Fisher: Yes, yes. That pretty much sums it up. And then all of a sudden, I started to feel a little worn down with what I thought was a sinus infection, which is probably a pretty common way of explaining things. One morning, I woke up and felt like I got hit by a truck. And I said, “This isn’t right.” And at the time, that was when the peak of it happened in Houston, Texas, that I knew at that point, I needed to get tested for COVID. And my first test actually came back with a false negative. Then a couple days later, I ended up in a ER with my feet turning blue, hyperventilating, and I coughed up blood. Via chest X-ray, I was diagnosed with COVID pneumonia, because they had already found a little spot on my right lung. My PCR test came back a couple days later positive.

I continued to struggle with healthcare system for the rest of that month, to the point where I was even sent away from another ER, being told that I just had a bad flu, and there was a couple-day wait for a bed at that facility. I was actually seen in a tented area in the hospital parking lot. That’s how bad things were. And so I found a PCP who was able to accept me with a positive diagnosis. I wasn’t able to test negative. So there was no area or a place that would let me inside to get blood work. And at the end of July—oh, I’m sorry. I don’t know if I said I started feeling bad in the end of June. So at the end of July is when my provider at the time said, “You got to go to an ER right now.”

On July 30th is when I was admitted into a COVID ICU and the medical district, where I stayed for a week, and was released into a rehab hospital. Symptoms continued, and I stayed there for almost three months.

Howard Forman: So first of all, Liza, thank you so much for sharing this story with us. It must always be painful to relive this. And from what you’re describing, you’re talking about four months being in a facility one way or the other with a disease that was new to most of us, and you were living it. Can you tell us a little more—when you got out of the rehab facility, did you feel like you were 99% back? Were you 90% back? Can you give us some relative sense of how much recovery you had? And how much disability you felt?

Liza Fisher: Oh, I was not back at all when I left. I was just able to be released. I struggled with the concept of identifying with “disabled,” but in the rehab center, doctors and nurses had already told me that I needed to start the process of filing for disability. My path began with the respiratory. It then grew into GI. Neuro crept along the way. In hindsight, it was more severe than I realized. By the time I was in the rehab center in that second week of August, I developed full-on debilitating tremors externally to the point where they were Parkinsonian-like and lost my ability to walk. I was also experiencing those internal tremors where it felt like the... earthquake inside my body. There was a disconnect between my brain and my feet. I had neuropathy. I developed a stutter. I was underperforming in dementia tests.

Harlan Krumholz: One thing, Liza, gosh, it’s just heartbreaking to hear this story, but I want to just draw out for the audience and also just for my own perspective. What it sounds like is that you were infected, but it wasn’t that you got really sick and had a long recovery process. This was something which never ended and was punctuated by exacerbations or actually the new emergence of symptoms along the way. Is that what I’m hearing? That you left, for example—you didn’t necessarily have the internal tremors when you were discharged, but then those came on later. I mean, these symptoms seem to come in waves and have different manifestations over time. Is that right?

Liza Fisher: Yes. Yes. For me, I have never had a period of recovery, a full recovery. And I’ve had some symptoms since the very beginning. And then I’ve had the emergence of new symptoms throughout the process.

Howard Forman: And compared with that now, so we’re a year and four months later, can you tell us, I mean, there’s a lot of story to tell in that time, but can you tell us a little bit about how much recovery you’ve experienced now and how much you feel is now a long-term challenge?

Liza Fisher: It is very difficult to quantify that, because it does kind of have this cyclical type of thing—I kind of got the “Corona-Coaster,” if you will—but if I had to quantify it, well, I can quantify different symptoms. For example, the external tremors have, on a good day, 90, 95% from where I was at my extreme reduction. Some days my internal tremors are completely gone. So there has been a significant improvement, but overall, still leading to a disabling lifestyle. I am just now to the point where I can stand up to brush my teeth or fix myself something to eat.

Howard Forman: One of the themes in your story that I got from listening to the [WBUR] interview was that you got a lot from social media and from interacting with others that had long COVID, from Diana Berrent’s group [Survivor Corps] and from others, and I’m just curious if you’d like to reflect on that and tell us how much help that may have provided to you compared with the traditional medical community that most of us rely on.

Liza Fisher: Yes. It has been an enormous amount of help, especially in the beginning. Those first five weeks, if it wasn’t for those groups, I thought I was going crazy, especially being that I was trying to fight it alone and didn’t know what was going on with my body, because there’s a lot of weird sensations and symptoms that at that time weren’t really publicized. Things like COVID psychosis, the tremors, the neuropathy. I thought I was going to be dealing with mostly respiratory and maybe GI symptoms and then experiencing those, I’m like, “What is wrong with me?” So reaching out online and finding other people who were like me was my saving grace at that point. And then even to the point where it increased in severity and starting to see new symptoms in a world where I was being told by medical personnel in the beginning, “We don’t know what’s wrong with you. We don’t know what the treatment is. We don’t know how long this is going to last.” And then finding people like in the March [2020] cycle who are already finding treatments on their own, when being able to take those to my medical providers, that was tremendously helpful and continues to be so.

Harlan Krumholz: First of all, let me just say that how you’re feeling now and that you’re still in the midst of it, it deepens our gratitude that you’re taking this time and devoting the energy to being part of this. I wonder if you could reflect a little bit on what has been your experience with the medical community? I mean, what’s been the best of it? What’s been the worst of it?

Liza Fisher: The best of it is, I’m at the point now where I’ve been able to create a team based off of researching their specialties and their interest in research and their capability to be part of my case and that they respect my level of intelligence and the research that I’ve done. So, I mean, for example, yesterday with my allergy and immunologist, we’ll exchange ideas on medications, and the first meeting we had, he even said, “How did you pick your team?” And I said, “Thank you for acknowledging that I did that because if you hadn’t, you would no longer be invited to it.” And I think that’s something that a lot of people are not familiar with the medical system, because I wasn’t, at the beginning. I mean, you go to your doctor and you think, “Oh, this is the person who has all the answers.” And when I was first told, “Oh, you might be in a wheelchair for the rest of your life; you may not walk functionally,” I realized, “No, you don’t have all the answers, because I’m going to do that. You need to work harder. I’m going to find somebody else who’s going to work as hard as me to do that.” So I’ve experienced that.

And then I’ve experienced the very opposite end of the spectrum, where you’re completely dismissed. Where I’m told, “Oh, you have a bad flu.” When I say, “No, I actually have a COVID pneumonia diagnosis.” “Oh, you do? When did you get that?” And then begging for medication and being told, “Well, it might not help you anyway. We can’t give it to you.” So I’m being completely dismissed and sent home.

Harlan Krumholz: We’ve heard from people that this is economically devastating for so many. And they’re trying to see whether it’s possible to get disability, but that the current systems aren’t configured to be able to best accommodate people with long COVID. Have you had any experience with that?

Liza Fisher: Yes. And on various points of the spectrum within that realm as well. I was fortunate that when I was in the hospital, I did have some friends who started to GoFund me, and that was able to keep me afloat. I filed and had private short-term and long-term disability. And I was able to start the process of federal disability sooner rather than later because of my medical team showing me the importance of why to do that. And then I actually did receive it very quickly based on the low level of my functionality. That being said, even within the insurance system, there’s so many issues. I mean, right now I’ve been on COBRA for a while because I lost my insurance while I was in the rehab hospital. So, and I couldn’t not go without coverage. So I went ahead and did the COBRA, and that’s what the GoFundMe helped me pay for. So trying to find a plan within the Affordable Healthcare Act that covers all of my doctors and my medications, it doesn’t exist. Well, the only way I’ve made this progress is because of the team that I’ve selected. Because they know these specialty illnesses and post-viral illnesses that can happen. Well, what do you do, then?

Harlan Krumholz: And you need rehab support too. You need more than just the doctors, right? And so often...

Liza Fisher: Exactly. Yes.

Harlan Krumholz: …that’s not covered. So anyway, I’m just saying, “Oh, wow.”

Liza Fisher: It is not. There’s, one of my occupational therapists said she had a stroke patient come in two days prior and he had, you know, your initial evaluation counts as one rehab session, and he had a healthcare policy where it offered him two. And she said, “Your next one’s it.” And that’s it! And he just left the building, crying.

Howard Forman: I want to just clarify for our listeners also, when you say, “COBRA.” COBRA insurance as you’ve alluded to can be very expensive because you go from having good employer-based insurance to having to pay for all of it out of pocket. And now you’re at the end of COBRA, I imagine right now. What are your options for continuing coverage?

Harlan Krumholz: And Howard, do you want to just define COBRA? Because not everyone may be familiar with what this is.

Howard Forman: Sure. So COBRA is insurance that is guaranteed through the federal government, that your employer must provide you with a continuity of your insurance for up to, I believe, 18 months after you sever connection with the plan from the employer. But it doesn’t go on forever, and you pay a lot for it because instead of your employer paying a large percent of the cost, you’re paying all of it. So a lot of people, when they hear the word COBRA, they know it’s expensive. You’ve correctly pointed out it was great that you had COBRA available, but it must have been very expensive.

Liza Fisher: It is very expensive. It’s more than a car payment. And then once you hit that 18-month mark, you’re exactly right, it increases 20%. But I have also, because I’m in the process of trying to weigh out all of my options financially to the point where I’m going to each specialist, especially the really important ones, to see if I could even work out a out-of-pocket plan, or a concierge plan where maybe I can pay them a certain amount just to receive their services for the remainder of the year, and they have told me that with my case and the services that I need and the care that I need, that I really need to try to do everything possible to keep the insurance that I have or the type of insurance that I have.

Howard Forman: Let me just, one question I wanted to have about what you are experiencing using social media transcends COVID as well. I’m curious because from having listened to your prior interview, you’ve had several diagnoses that are sort of adjacent to COVID itself, presumably related to COVID. But I’m just curious how those communities on Facebook, on other social media have been able to help you with your postural orthostatic hypertension and the other things that have been mentioned in the interviews.

Liza Fisher: Oh, oh, tremendously. I didn’t know about POTS until in a lot of the things about dysautonomia if it wasn’t for social media. That’s how I got the information and was able to find webinars about it. So I had known about dysautonomia and specifically POTS last July.

Did I think that that was going to happen to me? Not specifically, until I received the later-on diagnoses. Then from there I was able to join support groups, and I’ve actually found some of my specialists through those support groups. It’s a niche market.

Harlan Krumholz: And for people who are listening, POTS is this postural orthostatic tachycardia syndrome. It’s this idea that when you stand up your blood pressure can go down and your heart rate can speed up. Sometimes the heart rate doesn’t speed up. This was something that has been noted before, talked about, it often puzzling to doctors and patients, but has cropped up in the course of long COVID.

Many people have talked about it. Liza, if there’s something that you want to say to others, what would it be? I mean, there are lots of people who haven’t been quite as resourceful as you have. What is it that you would like people to know? And if you can use this platform to speak out to others who either have heard of this or are experiencing it.

Liza Fisher: I think the first thing would be is, don’t give up, because I think most people hear me, and it sounds very bright and very driven, and that hasn’t always been the case. I do experience dark moments, and there have been plenty of times where I’ve wanted to give up, and just don’t give up, because there’s always another option. There’s a bright light at the end of the tunnel. And if anybody is experiencing that in this moment, reach out, there’s support there. I’m accessible on social media. I have people reach out to me. I welcome you to do so.

The second thing is, there are ways to grab the knowledge and to take your own healthcare and just own it so that you can develop your own team and work with them so that you’re not gaslit as much, and educate yourself on the things that you could be diagnosed with in the possible treatments. And it’s really difficult in the situation, but it is one of the best options and one of the greatest things that you can do for help in your future.

Harlan Krumholz: And just as a follow-up to that, what would you tell people in the healthcare profession who are listening? I mean, what can we do better? And how can we improve the way that we take care of people in your situation?

Liza Fisher: I like to say, treat every patient as if it was a blank slate; it’s new. So have no preconceived notions. When that patient comes in, just see them as a blank slate. And then also have the compassion as if they were a family member or a loved one of yours.

Howard Forman: That is a very powerful message. And having been a patient for almost a month in the hospital this year, I can echo that as well. Can you tell us a little about your experience with Survivor Corps? And how people specifically can find you on social media if they want to follow up after this?

Liza Fisher: Yes. My experience with Survivor Corps has been wonderful. I met Diana through another podcast with PBS, and she was able to get me in contact with some other medical professionals who were able to provide some insight with treatment. And since then we’ve been able to work together and do some advocating. That’s been great.

And finding me on social media, it’s just enter my name, Liza Fisher, on Facebook. My profile’s public, and I’ve actually created videos. I started documenting my journey since Day One when I was sick and followed along that way. And my Instagram is travelingbirdofparadise, and I’ve had some documenting of my journey there as well.

Harlan Krumholz: I love that name, and Liza, thank you so much for joining us. And we hope to be back in touch. Maybe you can come back on in a few months, and we can follow your journey. And certainly we’re all going to be following you on social media.

Liza Fisher: Oh, great. Thank you so much for having me and creating the platform and the space for this.

Howard Forman: Harlan, what’s something that inspires you? Or keeps you up at night?

Harlan Krumholz: Well, certainly, like a lot of people, Omicron, the new variant of concern. We talked a little bit about it last week. It continues to occupy a lot of my thinking. In my most optimistic moments, I remain sort of hopeful that what’s going to happen is that this has increased transmissibility. I think that’s very well established now, but maybe less consequence than other variants that we’ve seen. Boy, that would be wonderful. That would mean that a lot more people who get infected are only mildly affected, if at all, and yet it sparks us to produce a lot of antibodies that protects us against future variants, but we need to stay vigilant. News is still coming out almost on a daily basis. And so like I said, what’s clear is that it seems to be spread more easily, but whether that’s going to cause catastrophic illness or not still remains to be seen. And I think a lot of people are now thinking, maybe not. How about you? What’s on your mind?

Howard Forman: Thanks. I totally agree with that, by the way. And I think that for the public who’s listening to us, vaccination, boosters, masking, and early testing, if you can, those things really help us. Those are the things we can do today while we think about, let policymakers think about Omicron for the future. As far as what’s on my mind, it’s really—

Harlan Krumholz: Let me just say one more thing. And the major danger to us still today remains Delta. The Delta variant, and for unvaccinated, that’s the major threat. We need to get people vaccinated and boosted.

Howard Forman: 100%, 100%. And the thing that’s on my mind today, honestly, is I’m usually a fan of the press secretary. I think they do a good job of communicating. And I was really put off this week that the press secretary was asked a very smart question about, how do we get testing into homes? And she was very dismissive of the idea that we should just be mailing it to the homes when a lot of our peer nations in the world are actually doing just that. And we need to get rapid testing to people now because early testing, accurate testing, timely testing is what can help us enormously. And we’ve been ignoring that component for a big piece of this pandemic. So I just want to give a shout-out to those people who are, already understand why testing is important and remind the press secretary that she would do well to sometimes listen to a reporter’s questions and maybe come back and apologize for that misstep that I think she made.

Harlan Krumholz: And I would love to see much more saliva testing. We had Anne Wyllie on; we’ve got Nate Grubaugh in our group. Saliva testing should be easy, ubiquitous, inexpensive if not free; it would help get us through. So I totally agree with you. Yes. You’ve been listening to Health & Veritas with Harlan Krumholz and Howard Forman.

Howard Forman: So how did we do? To give us your feedback, or to keep the conversation going, you can find us on Twitter.

Harlan Krumholz: I’m @hmkyale, H-M-K-Y-A-L-E.

Howard Forman: And I’m @thehowie, that’s @ T-H-E-H-O-W-I-E

Harlan Krumholz: Health & Veritas is produced with the Yale School of Management. Thanks to our researcher, Sherrie Wang, and to our producers, Blake Eskin of Noun & Verb Rodeo and Miranda Shafer. Talk to you soon, Howie.

Howard Forman: Thanks very much, Harlan. Talk to you soon.