A Better Understanding of Long COVID
While most patients who have COVID-19 completely recover within a few weeks, there are some patients who continue to experience symptoms that can last for months. These patients may require care for an extended period of time. Although much has been learned about COVID-19 over the past couple of years, there is still a great deal that’s unknown. In this episode, we’ll discuss long COVID including the typical symptoms, duration of symptoms, and who is most likely to develop long COVID.
Featuring:
Stephanie Rowlett, RN, earned her associate degree in nursing from Indian River State College in Fort Pierce, Florida. Stephanie brings a wealth of experience to our Post-COVID-19 Care Program with over 17 years working in emergency and trauma departments, plus 4 years in Cardiovascular ICU including open heart recovery.
Trinity Graham, APRN | Stephanie Rowlett, RN
Trinity Graham, APRN, is a board-certified nurse practitioner. She earned her Master of Science in Nursing at Florida Atlantic University in Boca Raton, Florida in 2015. She earned her Bachelor of Science in Nursing at University of Central Florida in Orlando, Florida in 2011 and her Bachelor of Science at University of Jacksonville in Jacksonville, Florida in 2001. She is certified by the American Academy of Nurse Practitioners in Family Health. She has also received certifications in Hospice and Palliative Care, Advanced Cardiac Life Support, and Basic Life Support.Stephanie Rowlett, RN, earned her associate degree in nursing from Indian River State College in Fort Pierce, Florida. Stephanie brings a wealth of experience to our Post-COVID-19 Care Program with over 17 years working in emergency and trauma departments, plus 4 years in Cardiovascular ICU including open heart recovery.
Transcription:
Prakash Chandran: We've all been affected by the global pandemic over the last few years. Most of us are painfully aware of what COVID-19 is and what the effects are, but nobody yet knows how long symptoms can last in the coming years post lockdown.
Here with us to discuss is Stephanie Rowlett, a registered nurse and Trinity Graham, an advanced practice registered nurse, both with Health First Post Covid 19 care program, providing education, resources and support to patients on their journey towards post Covid 19 wellness. This is Putting Your Health First, the podcast from Health First. My name is Prakash Chandran. So, Stephanie and Trinity, thank you so much for joining us today. I truly appreciate your time. Now, Trinity, I've heard of long COVID before, so I thought I would ask the basic question around what is the difference between COVID and long COVID.
Trinity Graham, APRN: So, COVID is referring to an infection with the SARS-CoV-2 virus. And it's also referred to as COVID-19. When you hear the term long COVID, it's referring to symptoms that are lasting up to or at least four weeks after a COVID infection. And these can be symptoms that develop four weeks after or even more.
Prakash Chandran: So Stephanie, when Trinity says symptoms, what are the symptoms of long COVID?
Stephanie Rowlett, RN: So, the symptoms vary from the individual. Some, there's over 200 different symptoms that they can report. The majority of patients report fatigue, brain fog, difficulty thinking, remembering things and focusing, headaches and dizziness. But these symptoms can vary pretty much to any system in the body.
Prakash Chandran: So Trinity, who exactly is most susceptible to developing long COVID?
Trinity Graham, APRN: That is a really interesting question and we don't have the answer to that. But at this time it looks like anybody is at risk of developing long COVID, and that is actually something we see in our clinic. People of all ages and different health backgrounds.
Stephanie Rowlett, RN: And I'll add to that, it seems that the majority of our patients are between the ages of 50 to 59. There is no correlation between their degree of symptoms during their infection and whether or not they got long COVID, whether or not they were hospitalized, whether or not they were vaccinated. It seems just kind of one of those things that anybody can get.
Prakash Chandran: Yeah, that's fascinating to hear. I totally thought that it affected a certain demographic, but you're kind of saying it affects people across the board. I wanted to focus in on symptoms a little bit. Stephanie, you know, Trinity alluded to the fact that long COVID needed to have symptoms lasting at least four weeks. Can you talk broadly about the duration of symptoms that you're seeing?
Stephanie Rowlett, RN: So, we have patients who had COVID as recently as four to six weeks ago. And we have patients who have had their last COVID infection was maybe late 2019, early 2020 before we were actually even testing or had any vaccinations for the virus. So, some of those patients from 2020 are still experiencing symptoms. Some of the patients from that time have had complete resolution of their symptoms. And then others, maybe that are just six weeks out from their infection are just kind of starting the process. It's a very long healing process to go through.
Prakash Chandran: So Stephanie, could you maybe elaborate a little bit more? So, you're saying that I guess the range goes sometimes four weeks, sometimes six weeks, sometimes even longer. Is there like a median time that you can point to where the symptoms stop or are treated over time? Or does it just affect everyone very differently?
Stephanie Rowlett, RN: Yes. It just affects everyone very different really. We haven't really been able to pinpoint any real specific timeline. Like I said, there are some patients that have literally been dealing with this for over two years, and the severity of their symptoms is different from person to person as well. Some patients are so affected that they're no longer able to do the work that they were doing. And then, there's some patients that weren't able to do the work that they were doing. But with some treatment options and counseling and us giving them some therapies to do at home, they have been able to go back to work and get back to their pre-COVID life.
Prakash Chandran: So, that leads me to my next question, Trinity, just around available therapies or treatment options. Is this something you can speak to?
Trinity Graham, APRN: I can speak to it, but unfortunately, there's no current treatment that has been identified to treat long COVID. And so, the focus for our work at this point in time is to meet with patients and evaluate the symptoms that they're experiencing, rule out any medical conditions that might be contributing to that, that we can find on laboratory blood work, diagnostics, things to that nature. And then, we really focus on helping manage and address the symptoms so that we can have as good a quality of life and as high as function as possible.
Prakash Chandran: Yeah. Something that you said there really resonates with me, and that's just remembering that this does affect people's quality of life, their ability to work and make an income. Trinity, I wanted to ask you a question. How has your experience just in the medical field and dealing with COVID over the past couple years informed your broader understanding of this disease, especially when it comes to long COVID?
Trinity Graham, APRN: That is a very interesting question. So, I've spent most of my career as a nurse practitioner working in the setting of serious illness, chronic disease management. So, my experience with COVID as the pandemic began and working through that, and now on the other side and helping address long COVID, I'm used to helping people kind of redefine how to live their life in the setting of a serious or severe illness. The difference with long COVID is the guidance that we can give them is sometimes different because we don't have lots of years of research and evidence-based clinical treatments to provide. So to kind of summarize that, I've been able, throughout my career, to develop skills to help people to cope with life-changing medical conditions. So, that's been helpful in this setting, but again, without more concrete answers and guidance that I was able to draw on before.
Stephanie Rowlett, RN: Yes. And for myself, I did work at the bedside at the beginning of COVID. So, I was able to see the acute illness portion of it, and then, switched over to the long COVID side. We're finding that a lot of these patients to this point have had nowhere really to turn to. Nobody 100% believed what they were saying, that their symptoms were real. And in a lot of cases, just being able to sit down and talk with us and know that they're not alone, that there are other patients that we are treating and some patients that have been able to get back to their pre-COVID lifestyle, that that's possible, that this doesn't have to be what we call "new normal."
Trinity Graham, APRN: So, Stephanie brings up a really good point and in that initial visit that we have with people coming in to see us, whether they've struggled for a matter of weeks or months, after we sit and listen and talk with them, a lot of times you can just kind of see and a lot of times they'll express a sense of relief just being heard and somewhat understood in what they're going through.
Prakash Chandran: I am so glad you brought that up because that's something that I've even experienced within my own social circles where the minority of people in my friend groups that have experienced these longer term symptoms have felt siloed and alone. They feel like, "Why is this happening to me? Is there anyone else that can relate to what I'm going through?" And sometimes just providing that empathy, just letting them know that you're not alone. There are people going through this and there are ways that we can work together to try to get you some reprieve is so critically important. And so, Stephanie, thank you so much for bringing that up. Is there anything else that you want to share just around that piece of it if someone is listening to this that maybe feels a little siloed?
Stephanie Rowlett, RN: Just know that we are here, and that you can find us on the website and call us at the number provided, 321-434-3007. We'll be happy to set you up with a screening appointment and we can discuss it all with you and hopefully help you to navigate what you're going through.
Trinity Graham, APRN: And I'd like to add that the people that we are seeing aren't necessarily the people that were the very sickest with the actual acute COVID infection. They maybe had a mild case and got through it pretty well without having to be seen at the emergency room or the hospital. But that doesn't mean that they're not going to be the ones developing symptoms and coming in to see us later.
Prakash Chandran: And Trinity, are there any advancements in research or technology that are either underway or that have happened in terms of understanding and treating long COVID?
Trinity Graham, APRN: So, that's a really great question. One thing I can cite is the National Institute of Health has the RECOVER Initiative. And so, it's a pretty comprehensive system of funding research aimed to address many, many topics and concerns regarding long COVID and the impact it has on the United States specifically.
Prakash Chandran: So, Stephanie, just before we close here, I imagine a big piece outside of the physical symptoms that someone experiences from long COVID is the mental health implications. You know, feeling alone and feeling like they're never going to get over this has to take a toll. So, could you maybe talk a little bit about what you are seeing and what you tell people that are going through kind of a mental battle around what they should do for their mental health?
Stephanie Rowlett, RN: Sure. So, it is a huge problem, and we all know that your physical health drives your mental health, drives your physical health. So if you're not feeling well or you're not to a hundred percent, you have those kind of expectations of yourself and other people have expectations of you, of what you've previously been able to do.
So, a lot of times these patients are suffering from no longer being able to do either the recreation that they used to do, maintaining their homes the way they were, raising their children the way they were and also performing at work. So, it takes part of their identity away and that is very difficult to handle. We do have services to assist them with that. And we do put a big emphasis on mental health and the treatment of this because, if you mentally are just always in the negative and always down, then physically you're just going to always feel down. And we try to provide those services, and that's a big portion of what we do and the way that the program is set up so that we do have the time to speak and allow them the opportunity to vent and to ask questions. A lot of people, their family members don't believe, their friends don't believe. They don't understand why they can't just do and power through. And what we've found that that power through is actually the worst thing that they can do for themselves right now during this process.
Trinity Graham, APRN: I'd like to add just as a focus on mental health, that is a large component of our initial evaluation and meeting with people. We're not only asking questions regarding symptoms of their physical health, but also their mental health. So, that is a huge component of even our very first interactions and it continues on through working with us throughout the program.
Prakash Chandran: Well, Stephanie and Trinity, this has been a fascinating conversation. I've learned a lot about what the differences are between COVID and long COVID and the resources that are available to people and also that people shouldn't feel alone, right? There's a lot of people that are going through this. There's active research that's happening to find treatment and to find cures for people that are going through this. So, thank you both so much for your time.
Stephanie Rowlett, RN: Thank you for having us.
Trinity Graham, APRN: Thank you.
Prakash Chandran: That was Stephanie Rowlett, a registered nurse and Trinity Graham, an advanced practice registered nurse, both at Health First.
Thank you so much for listening to Putting Your Health First. To learn more about Health First's post Covid 19 care program, please visit hf.org/post covid 19. Thanks for listening and be well.
Prakash Chandran: We've all been affected by the global pandemic over the last few years. Most of us are painfully aware of what COVID-19 is and what the effects are, but nobody yet knows how long symptoms can last in the coming years post lockdown.
Here with us to discuss is Stephanie Rowlett, a registered nurse and Trinity Graham, an advanced practice registered nurse, both with Health First Post Covid 19 care program, providing education, resources and support to patients on their journey towards post Covid 19 wellness. This is Putting Your Health First, the podcast from Health First. My name is Prakash Chandran. So, Stephanie and Trinity, thank you so much for joining us today. I truly appreciate your time. Now, Trinity, I've heard of long COVID before, so I thought I would ask the basic question around what is the difference between COVID and long COVID.
Trinity Graham, APRN: So, COVID is referring to an infection with the SARS-CoV-2 virus. And it's also referred to as COVID-19. When you hear the term long COVID, it's referring to symptoms that are lasting up to or at least four weeks after a COVID infection. And these can be symptoms that develop four weeks after or even more.
Prakash Chandran: So Stephanie, when Trinity says symptoms, what are the symptoms of long COVID?
Stephanie Rowlett, RN: So, the symptoms vary from the individual. Some, there's over 200 different symptoms that they can report. The majority of patients report fatigue, brain fog, difficulty thinking, remembering things and focusing, headaches and dizziness. But these symptoms can vary pretty much to any system in the body.
Prakash Chandran: So Trinity, who exactly is most susceptible to developing long COVID?
Trinity Graham, APRN: That is a really interesting question and we don't have the answer to that. But at this time it looks like anybody is at risk of developing long COVID, and that is actually something we see in our clinic. People of all ages and different health backgrounds.
Stephanie Rowlett, RN: And I'll add to that, it seems that the majority of our patients are between the ages of 50 to 59. There is no correlation between their degree of symptoms during their infection and whether or not they got long COVID, whether or not they were hospitalized, whether or not they were vaccinated. It seems just kind of one of those things that anybody can get.
Prakash Chandran: Yeah, that's fascinating to hear. I totally thought that it affected a certain demographic, but you're kind of saying it affects people across the board. I wanted to focus in on symptoms a little bit. Stephanie, you know, Trinity alluded to the fact that long COVID needed to have symptoms lasting at least four weeks. Can you talk broadly about the duration of symptoms that you're seeing?
Stephanie Rowlett, RN: So, we have patients who had COVID as recently as four to six weeks ago. And we have patients who have had their last COVID infection was maybe late 2019, early 2020 before we were actually even testing or had any vaccinations for the virus. So, some of those patients from 2020 are still experiencing symptoms. Some of the patients from that time have had complete resolution of their symptoms. And then others, maybe that are just six weeks out from their infection are just kind of starting the process. It's a very long healing process to go through.
Prakash Chandran: So Stephanie, could you maybe elaborate a little bit more? So, you're saying that I guess the range goes sometimes four weeks, sometimes six weeks, sometimes even longer. Is there like a median time that you can point to where the symptoms stop or are treated over time? Or does it just affect everyone very differently?
Stephanie Rowlett, RN: Yes. It just affects everyone very different really. We haven't really been able to pinpoint any real specific timeline. Like I said, there are some patients that have literally been dealing with this for over two years, and the severity of their symptoms is different from person to person as well. Some patients are so affected that they're no longer able to do the work that they were doing. And then, there's some patients that weren't able to do the work that they were doing. But with some treatment options and counseling and us giving them some therapies to do at home, they have been able to go back to work and get back to their pre-COVID life.
Prakash Chandran: So, that leads me to my next question, Trinity, just around available therapies or treatment options. Is this something you can speak to?
Trinity Graham, APRN: I can speak to it, but unfortunately, there's no current treatment that has been identified to treat long COVID. And so, the focus for our work at this point in time is to meet with patients and evaluate the symptoms that they're experiencing, rule out any medical conditions that might be contributing to that, that we can find on laboratory blood work, diagnostics, things to that nature. And then, we really focus on helping manage and address the symptoms so that we can have as good a quality of life and as high as function as possible.
Prakash Chandran: Yeah. Something that you said there really resonates with me, and that's just remembering that this does affect people's quality of life, their ability to work and make an income. Trinity, I wanted to ask you a question. How has your experience just in the medical field and dealing with COVID over the past couple years informed your broader understanding of this disease, especially when it comes to long COVID?
Trinity Graham, APRN: That is a very interesting question. So, I've spent most of my career as a nurse practitioner working in the setting of serious illness, chronic disease management. So, my experience with COVID as the pandemic began and working through that, and now on the other side and helping address long COVID, I'm used to helping people kind of redefine how to live their life in the setting of a serious or severe illness. The difference with long COVID is the guidance that we can give them is sometimes different because we don't have lots of years of research and evidence-based clinical treatments to provide. So to kind of summarize that, I've been able, throughout my career, to develop skills to help people to cope with life-changing medical conditions. So, that's been helpful in this setting, but again, without more concrete answers and guidance that I was able to draw on before.
Stephanie Rowlett, RN: Yes. And for myself, I did work at the bedside at the beginning of COVID. So, I was able to see the acute illness portion of it, and then, switched over to the long COVID side. We're finding that a lot of these patients to this point have had nowhere really to turn to. Nobody 100% believed what they were saying, that their symptoms were real. And in a lot of cases, just being able to sit down and talk with us and know that they're not alone, that there are other patients that we are treating and some patients that have been able to get back to their pre-COVID lifestyle, that that's possible, that this doesn't have to be what we call "new normal."
Trinity Graham, APRN: So, Stephanie brings up a really good point and in that initial visit that we have with people coming in to see us, whether they've struggled for a matter of weeks or months, after we sit and listen and talk with them, a lot of times you can just kind of see and a lot of times they'll express a sense of relief just being heard and somewhat understood in what they're going through.
Prakash Chandran: I am so glad you brought that up because that's something that I've even experienced within my own social circles where the minority of people in my friend groups that have experienced these longer term symptoms have felt siloed and alone. They feel like, "Why is this happening to me? Is there anyone else that can relate to what I'm going through?" And sometimes just providing that empathy, just letting them know that you're not alone. There are people going through this and there are ways that we can work together to try to get you some reprieve is so critically important. And so, Stephanie, thank you so much for bringing that up. Is there anything else that you want to share just around that piece of it if someone is listening to this that maybe feels a little siloed?
Stephanie Rowlett, RN: Just know that we are here, and that you can find us on the website and call us at the number provided, 321-434-3007. We'll be happy to set you up with a screening appointment and we can discuss it all with you and hopefully help you to navigate what you're going through.
Trinity Graham, APRN: And I'd like to add that the people that we are seeing aren't necessarily the people that were the very sickest with the actual acute COVID infection. They maybe had a mild case and got through it pretty well without having to be seen at the emergency room or the hospital. But that doesn't mean that they're not going to be the ones developing symptoms and coming in to see us later.
Prakash Chandran: And Trinity, are there any advancements in research or technology that are either underway or that have happened in terms of understanding and treating long COVID?
Trinity Graham, APRN: So, that's a really great question. One thing I can cite is the National Institute of Health has the RECOVER Initiative. And so, it's a pretty comprehensive system of funding research aimed to address many, many topics and concerns regarding long COVID and the impact it has on the United States specifically.
Prakash Chandran: So, Stephanie, just before we close here, I imagine a big piece outside of the physical symptoms that someone experiences from long COVID is the mental health implications. You know, feeling alone and feeling like they're never going to get over this has to take a toll. So, could you maybe talk a little bit about what you are seeing and what you tell people that are going through kind of a mental battle around what they should do for their mental health?
Stephanie Rowlett, RN: Sure. So, it is a huge problem, and we all know that your physical health drives your mental health, drives your physical health. So if you're not feeling well or you're not to a hundred percent, you have those kind of expectations of yourself and other people have expectations of you, of what you've previously been able to do.
So, a lot of times these patients are suffering from no longer being able to do either the recreation that they used to do, maintaining their homes the way they were, raising their children the way they were and also performing at work. So, it takes part of their identity away and that is very difficult to handle. We do have services to assist them with that. And we do put a big emphasis on mental health and the treatment of this because, if you mentally are just always in the negative and always down, then physically you're just going to always feel down. And we try to provide those services, and that's a big portion of what we do and the way that the program is set up so that we do have the time to speak and allow them the opportunity to vent and to ask questions. A lot of people, their family members don't believe, their friends don't believe. They don't understand why they can't just do and power through. And what we've found that that power through is actually the worst thing that they can do for themselves right now during this process.
Trinity Graham, APRN: I'd like to add just as a focus on mental health, that is a large component of our initial evaluation and meeting with people. We're not only asking questions regarding symptoms of their physical health, but also their mental health. So, that is a huge component of even our very first interactions and it continues on through working with us throughout the program.
Prakash Chandran: Well, Stephanie and Trinity, this has been a fascinating conversation. I've learned a lot about what the differences are between COVID and long COVID and the resources that are available to people and also that people shouldn't feel alone, right? There's a lot of people that are going through this. There's active research that's happening to find treatment and to find cures for people that are going through this. So, thank you both so much for your time.
Stephanie Rowlett, RN: Thank you for having us.
Trinity Graham, APRN: Thank you.
Prakash Chandran: That was Stephanie Rowlett, a registered nurse and Trinity Graham, an advanced practice registered nurse, both at Health First.
Thank you so much for listening to Putting Your Health First. To learn more about Health First's post Covid 19 care program, please visit hf.org/post covid 19. Thanks for listening and be well.