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Deb Melani Welcome to CU Anschutz 360, a podcast about the CU Anschutz Medical Campus. We feature faculty, staff, and students, and their interesting and innovative work. I'm Deb Melani, a science writer in the Office of Communications.
Today, we are speaking with Dr. Sarah Jolley, an assistant professor at the University of Colorado School of Medicine and a specialist in pulmonary and critical care. Dr. Jolley was working on launching a post-ICU care clinic on campus with UCHealth when the pandemic struck. The timing allowed for a quick pivot to one of the area's first post-COVID-19 clinics focused on patients with lasting symptoms.
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One of those patients, CU Boulder graduate Harper Powell, also joins us today. A Boettcher scholar, President's Leadership Class scholar, accomplished musician, and mountain bike champion, Harper's world changed when she contracted COVID in February 2020. Today, she is one of the hundreds of thousands of Americans we now call long-haulers.
Thank you both for being here today.
Harper Powell Thanks for having us.
Deb Melani So Harper, will you start us off by just sharing a bit about your COVID-19 story?
Harper Powell Yeah, so I was actually studying abroad in France in 2020, the spring semester. I was a junior in college and it was late February, about February 24th, and I started feeling a really tight chest sensation. And it was like that for about a week almost, where I just had this really heavy weight around my chest, and I could tell I was getting sick.
After about a week or so, I started having other symptoms and coughing, and definitely came down with a bug. And I was afraid that it was COVID, but I didn't want to kind of believe that it was because it was early on and we didn't know that it was in our communities at that point in Europe and everything and everywhere. And several of my friends got sick right around the same time, but they recovered. So after a couple of weeks, I thought I was better.
And by that point, it was mid-March and we were all called home from our study abroad programs, and figuring out how to terminate the program, get home really quickly, and finally did around March 17th. And around that time, I started feeling the symptoms come back stronger when I thought I had gotten rid of them. And so it was kind of a relapse, I guess, or just the symptoms never really left, and combination of stress and various factors, and they came on again pretty strong. And I got home and rested and did all the things that I knew how to do, and they weren't getting better.
Deb Melani How did you end up finding Dr. Jolley?
Harper Powell Yeah. So it wasn't until for most of the spring and summer. I didn't really know what was going on, but after a month or two started suspecting that it was COVID-related and that it was probably COVID that I had. By the fall, I was really wanting to search for answers and get some help.
And I actually was Googling around because I had heard rumors that there was a post-COVID clinic here at UCHealth, but I hadn't been able to get a hold of any of the information. And so I started Googling and I found an article. I think it was through UCHealth. And I emailed Dr. Jolley, and she responded and said, "Come on into the clinic." And that's how I got connected
Deb Melani Dr. Jolley, how many patients have gone through the post-COVID clinic in the past year? And how does Harper's experience and symptoms compare with other long-hauler cases you've seen?
Sarah Jolley Yeah. So over the last year within the post-COVID clinic specifically, we've seen about 300 patients, and we've seen the full spectrum of patients with almost identical stories to Harper's, where they were outpatients with relatively milder disease to begin with in previously young, healthy, pretty athletic individuals who had persistent, ongoing symptoms.
And then we see the spectrum in hospitalized post-ICU patients too, who deal with a slightly different kind of recovery than our more typical long-hauler patients. And so we started out with the post-ICU patients, and then over time, there were more and more of the outpatient long-hauler patients that came into the clinic. And I would say at this point it's about 50-50 percent in terms of patients that we're seeing with post-ICU and post-COVID.
Deb Melani So I don't think maybe a lot of people realize how many long-haulers are so young and so fit. Have doctors learned about that and about who COVID strikes as a long-hauler?
Sarah Jolley Yeah. And I think it was not expected by the medical community when this started to become more apparent in the middle of summer last year. And I think around that time that Harper was reaching out is when we were seeing more and more of these patients who were like, "My disease wasn't too bad, but I am really symptomatic." And what we've seen most commonly is similar to what Harper describes in terms of pretty significant fatigue, pretty significant exertional intolerance, and then also a lot of the shortness of breath and chest discomfort.
And over time, we've learned that that's probably a couple of different things contributing to that. We have some patients that have some evidence of pulmonary dysfunction, some that have evidence of cardiac dysfunction, and then some that have more of a chronic fatigue, myalgic encephalitis type picture where they have this marked exercise intolerance and fatigue likely attributed to the virus.
And then we're also learning more and more about dysautonomia related to COVID and that the virus seemed to trigger an abnormal response in the autonomic nervous system. And that has led to tachycardia, to high blood pressure, to orthostasis, to a number of different symptoms in our patients. And that is also seen to contribute to this exertional intolerance that many people are experiencing.
And I think Harper can probably speak to that in terms of what her level of fitness was before and kind of what she feels now.
Deb Melani Exactly. How central were athletics and competing in your life, and how did COVID affect your fitness level, Harper?
Harper Powell Yeah. They were very central. I mean, I've competed in various athletic capacities from when I was pretty young, doing swim team and cross-country skiing. And in high school, I raced mountain bikes. And then in college, I also raced mountain bikes every fall.
So I always had mountain bike season in the summer and fall. And then I would do other casual sports during the winter and spring, like running or cross-country skiing and those types of things.
So yeah, I mean, only months before getting sick, I had been at the USA Cycling Collegiate Championships. And so I'm used to kind of pushing my body at a high level and being able to recover quickly because that's part of competing is you push your body really hard and then you trust that it's able to recover.
And so for getting sick and not having that same kind of bounce back was really surprising and hard to come to terms with, for sure.
Deb Melani Did you say that right after you first got sick, that you went out and tried to get back into your -
Harper Powell - Yeah.
Deb Melani And then it all kind of went downhill?
Harper Powell Yeah. I mean, after a couple weeks, I thought I had been past the worst of the illness. So I started kind of resuming my exercise routine. And at first, it felt okay. And then by the time I was home back in Colorado again, I was sick enough where I just decided to rest.
And then after a couple of weeks, typically what you think is like, "Okay, well, I mean, I was sick over a month ago. I mean, I'm sure a little bike ride or a walk would be fine." And so last year in March or April, I would try going on a really easy road ride or something and would come back and either immediately, or sometimes hours later, I would have a blistering headache and really bad fatigue, and the chest symptoms would increase. I also have had really low blood pressure. So I'd feel pretty weak and dizzy and just a combination of things that would really flare their heads after something like that.
Deb Melani Dr. Jolley, is there any evidence that long-haulers tend to push themselves too hard after illness?
Sarah Jolley I don't think it's necessarily them pushing themselves too hard. I think that there certainly is a lot of described post-exertional malaise, like Harper is describing, in people who were active who try to get back out to doing their prior level of activity.
Normally, we want people, when they're recovering from illness, to become active and get back to being active. And we don't typically discourage that. But in the long-hauler patients, we have seen relatively consistently just what Harper describes, where if people do it too quickly, that sometimes it can set them back rather than move them forward.
And so what our rehabilitation colleagues have been advising is to do things in a more paced manner and to gradually build up strength and exercise rather than just jumping back in. And I think that's hard for a lot of our patients that were previously fit and active and just want to get back to their prior way of being.
Deb Melani I understand that you also sing and perform quite a bit, Harper. Did the effects on your lungs affect your singing, your performing?
Harper Powell Thankfully, they did not. I was able to come back home. And I remember being in isolation for the two weeks after I got off the plane kind of away from my parents. And so I had my music with me because otherwise, I was alone. And I was able to sing and play, so I was really grateful for that. This whole year, I've still had my music, which is something that has kept me kind of rooted to myself in a year where I didn't really feel like myself.
So yeah, it's an interesting thing because I have enough breath. I have enough air to sing. But I do notice a little bit of differences in... Very subtle. I don't think listeners can hear them, but I'm able to go deeper because of whatever's happening physically with my chest, and my voice can go deeper than it ever used to. That doesn't feel normal. And sometimes, my breath coming out feels a little shaky or the heartbeat is sort of... I don't know... messing with how it comes out. And those are just my perceptions, and they're very subtle. And I don't think anybody could really tell, but I notice small differences. I'm just grateful that the post-COVID symptoms haven't interfered with my ability to sing and play music.
Deb Melani What do we know, Dr. Jolley, about the effects of COVID on long-haulers' lungs and heart?
Sarah Jolley We are learning more every day. We certainly know that there are patients that have identifiable pulmonary disease and cardiac disease. With the pulmonary disease, most commonly being post-viral reactive airways disease or an asthma-like sensitivity of the airways. And then a number of patients who have been in the hospital have persistent pneumonia. Or some even go on to develop scarring or fibrosis in the lungs. And then in the heart, there is a subset of patients that have evidence of ongoing inflammation either in the lining around the heart, pericarditis, or in the muscle of the heart itself, myocarditis. And that frequency has been debated a bit, but can be as high as a quarter of patients who have had COVID. And so our cardiologists here, as part of our clinic, are looking at that very closely and looking at heart function, but we've also seen arrhythmias with a lot of patients experiencing high heart rates.
And then as Harper describes, we've seen blood pressure fluctuations with either blood pressures that are too high in people who have never had blood pressure problems, or blood pressures that are low particularly when moving, consistent with orthostasis. And then the sensation of breathlessness is still trying to be fully understood in COVID because even in the absence of identifiable pulmonary or cardiac disease, many of these patients experience the sensation of feeling breathless. And there's a lot of discussion and debate as to what that might be from. Whether that can be related to some mitochondrial dysfunction or long-term muscle injury or some of this dysautonomia, we still don't fully know. And a lot of that's being explored, right now.
Deb Melani How does the treatment at your clinic work? What's the program like?
Sarah Jolley It really depends on the patient and what they're experiencing because not all long-haulers... While the symptoms are often very similar, they can come from different etiologies. So depending on what... If we have an identifiable pulmonary or cardiac etiology, we will treat that more aggressively. And then for many of our patients, we do get them within a rehab program to try to pace that exercise.
Again, understanding that we don't want to do it too quickly, but in a way that will get people back to activity without setting them back. And then we do work as a clinic together. So we have providers from cardiology, providers, from rehabilitation medicine, providers from integrative medicine now to kind of talk about cases on a case-by-case basis to say, "Hey, what can we be doing? Should we be looking at this?" to try to get this person feeling a little bit better.
Deb Melani Is mental or behavioral health part of the program?
Sarah Jolley Yeah. So Dr. Thida Thant with psychiatry has assisted with our program both for our ICU patients and our post-COVID patients, and they've set up COVID-specific support groups and group therapy to be able to help people recovering from COVID, either long COVID or people who've been in the hospital, come together and talk about their experience because certainly, Harper talking to another COVID patient, they're probably going to understand their experience together in a much different way than we as healthcare providers understand, having not experienced it.
And I think Harper can speak to this a little bit, but the COVID patient groups have been great in coming together to kind of be that support network nationally for each other too, in a way that we haven't seen with other diseases before.
Deb Melani They're actually quite large, right? Do you know how many people are involved in those?
Harper Powell I mean, hundreds of thousands. They're international groups, really. There's some incredibly large ones on Facebook. I think Survivor Corps has well over 100,000 members, and then I'm a member of some other groups. And they've definitely been very helpful in various capacities for finding resources, finding tips, and also just sharing experiences, and connecting with other long-haulers throughout this process has been absolutely monumental.
And just having somebody to relate to.
And like you were saying, Dr. Jolley, there's something unique about connecting with other people who are having this very unique experience because it's also unknown. And so to just be able to relate over something like that is really, really crucial.
Deb Melani What else about your treatment has helped the most?
Harper Powell I mean, I will say one of the most helpful things has just been having doctors who really care and are persistent. And I think finding Dr. Jolley was probably the first time, if not one of the first times throughout the whole last year that I felt like I was truly listened to, and like I found someone who is going to help me and guide me through this process, because before that, I felt a little bit alone, and I had seen a couple medical providers that just didn't really know what to do because they'd never come across this before. So it was just really helpful to find Dr. Jolley and have her refer me to other specialties that could try to get to the root of some of my symptoms as well. And working with Dr. Altman in cardiology was really helpful as well.
As far as other treatments, I've really approached things with a multi-pronged methodology of just wanting to address various things such as what's going on physically, but also how are the physical symptoms interacting with what else is going on in my body and mentally and emotionally, and trying to address all of them and not blaming my physical symptoms on mental, emotional issues necessarily, but sort of working in tandem with all of them.
So I would say having answers from western medicine and getting these scans done has been super helpful to kind of be able to visualize what's going on and then sort of have an idea of what I can do to move forward and take steps to start feeling better.
And so a lot of things I have taken from these various support groups and COVID groups and found online resources and really educated myself about what might be going on with my body, because it does manifest itself differently in different people, long COVID does. And so trying to get to the root of mine and addressing it from integrative medicine as well, and trying to just balance the searching and knowledge with the healing approach too.
Deb Melani Did you happen to get your COVID vaccine?
Harper Powell Yes.
Deb Melani How did you feel afterward? Because I understand that some people are reporting that their symptoms are finally going away.
Harper Powell Yeah. A lot of people have various responses to the vaccine, from what I've seen in the COVID support groups. There's one that I follow that has a whole section where people can post on their vaccine experiences. So there's definitely a wide range of responses to it. And a lot of long-haulers have pretty noticeable side effects and feel worse for a time, and then they get better. I had a different experience. I didn't have much side effects following, and I got a vaccine with two doses. After the first one, I was a little bit more fatigued than I usually am and might've had swollen glands, but otherwise didn't feel too much. After the second one, it was pretty similar. I haven't felt that change in my long-haul symptoms since getting the vaccine, but I'm not super concerned because I wasn't overly hopeful beforehand that it would solve everything because I have an idea of what's going on in my body, and I think it might take more than just a vaccine to help things along.
Deb Melani How do you stay so positive?
Harper Powell I mean, it's been a long year, and every moment is certainly not positive and hopeful. And I spent a lot of last summer in uncertainty and kind of grieving what I felt like I lost. And so it's been a long process, and all of it is not positive and hopeful.
But finding these stories, finding these anecdotes of people who do make progress and do come out of things, those things lift me up. Interacting with other long-haulers, I mean, you really kind of become friends with them because you're so vulnerable with each other and you understand what each other's going through.
Establishing relationships has been really helpful. Gaining a better understanding of what's going on in my body and how I think I can help myself in the healing process and sort of establishing the faith in myself too, because there's an element of long COVID of, for me at least, searching outwards for a lot of the time, trying to find answers outside of myself for so many months last year and trying to find the miracle cure or the doctor who will just solve everything, like you just want to hand over your problems to someone who will just tell you what's going on and we'll fix it.
The reality is that it's not quite that simple. I mean, I'm so grateful to have the huge support that I have through UC Health in this community. But at the end of the day, I have to have the faith in myself too, that I can support myself in the healing process and that I already have tools to trust my body in the healing process as well. So it's a combination of things.
Deb Melani Dr. Jolley, what has your experience been with your patients and the vaccine?
Sarah Jolley Yeah. I think it's similar to what you described, that some patients experience some improvement with the vaccine. I don't think we fully understand why patients have different experiences and why some symptoms are improved with the vaccine.
But we have anecdotally in our clinic heard patients who have had symptoms improve with getting the vaccine. I will say that I am incredibly thankful to patients like Harper who have shared their story because I think that in addition to bringing patients together, it's also prompted the scientific community to invest resources in post-acute COVID.
You may have heard that NIH announced dedicated funding announcements targeted at understanding the mechanisms and the etiologies of long COVID. And so while we don't have answers yet, I'm hopeful that by these groups coming together and sharing their data and sharing their experience, it will prompt a better understanding over time with science.
Deb Melani What are we doing on the CU Anschutz Medical Campus in regard to long-hauler research?
Sarah Jolley Our campus has participated in some of those proposals to help create a cohort of long COVID patients to understand the symptomatology. And then we have a couple of ongoing natural history studies looking at pulmonary recovery and looking at immunologic recovery with different investigators.
And then we actually are going to start as a site for an interventional study for patients who have post-COVID fibrosis to see if a novel drug can actually help to reduce some of the progression. So I think the hope with these research efforts is that as we are describing the disease, just like we did in the acute setting, as we're learning more, we're also thinking about interventions that we can then employ to see if we can impact the trajectory of recovery.
Deb Melani And that includes the research initiative that your clinic is part of, the US research initiative?
Sarah Jolley Our clinic participates in a post-ICU collaborative called the CAIRO network. And then our patients contribute a lot of post-COVID data to the ongoing patient-led initiatives. And then these other initiatives that are being looked at right now to be funded are with different networks or different multi-center collaborations.
When we started our clinic, we actually reached out to Mount Sinai because New York was at the epicenter of this early on. And so we met with our clinic early on to understand what they were doing and then modeled ours after what they were learning. And so I think throughout COVID, there's been a lot of knowledge sharing amongst providers who are doing post-COVID work to try to understand what we're seeing and then also just share experience and data so that we can all learn as we go.
Deb Melani And I understand your clinics have had long waitlists at times. Where are your patients coming from and what does that say about the need for care in the state or region?
Sarah Jolley I regret that that's a limitation, that we do sometimes have long waits, but it's because we've had 30 million patients infected with COVID in the US, and they estimate that long-hauler symptoms are evident in about 20% of those patients.
That is a large number of patients with potential need. And so as our clinic has become more established, there has been need from all over the state of Colorado and people wanting to help be seen or to understand their symptoms.
And so being just a single clinic, it's hard for us to ramp up to take everyone. But what we're trying to do is to disseminate some of this information about long COVID. And I hope that things like today will help with that so that providers understand and recognize that the symptoms that their patients are coming in with are likely COVID-related, and so that we can disseminate this more broadly to primary care providers and providers across the state to help share some of the burden.
Deb Melani Harper, would you end with two things? Can you tell us how this experience has changed you the most and what your best advice to other patients in your shoes are right now?
Harper Powell I mean, I think the experience has changed me in a lot of ways.
Probably one of the biggest is just learning to listen to my own needs and figure out where they're coming from and getting to know myself maybe more in deeper ways than I ever have before, because with something like a chronic illness, you can't get away from it. And it's so obvious and in front of you. And so you've got to come to terms with some surprising or difficult things anyway. So part of that is perseverance and part of it is just coming to kind of a deeper sense of understanding in myself, I think.
As far as advice for other people dealing with long COVID or an unknown illness or people who are just diagnosed with COVID, any of those kinds of things, I mean, one, long-haulers, I would say it's really important to advocate for yourself depending on where you are either in the process of long COVID or where you are physically or the kind of people around you, to recognize that what you are feeling is real.
And it's okay to search for answers and to ask for the things that you need, because asking might help you learn more and might help you get to a place where you have a better handle on what's going on and hopefully improve.
And so definitely advocating for yourself and also being gentle with yourself and trusting in the process, trusting that there are resources out there and not giving into the despair or the unknown too much because I think there's an element of perseverance and searching for answers and just helping and supporting yourself along the way that's important.
Deb Melani Great. Thank you. Dr. Jolley, would you end by describing how you view the scope of this problem and what you would want your medical colleagues to keep in mind moving forward?
Sarah Jolley Yeah, and I think Harper's done a beautiful job of summarizing this experience from the patient side. And I would just echo what she's described and that these patients are experiencing ongoing symptoms, and they're struggling, and we need to invest just as many resources in recovery and understanding how we can help people over the long-term as we did on the acute phase.
And so I think recognizing that this problem is there, it's real. And as a scientific and medical community, we should come together to support patients who are recovering from this.
Deb Melani Thank you so much. Thank you both so much for being with us today. I really appreciate it, and I wish you the best, Harper.
Harper Powell Thank you.
[Music - Acknowledgments and Credits]
‘CU Anschutz 360’ is produced by the University of Colorado Anschutz Medical Campus.
Story editing and production by Deb Melani and Chris Casey. Mix and tech production by Kelsea Peters and Matt Hastings. Digital design by Sarah Adams and Jenny Merchant. A thanks to the rest of the office of communications team for support and edits.
A special thanks to Denver band Splitstep for our theme music, featuring School of Medicine student Matt Golub - class of 22, Daniel Carillo, and Kevin Mackinnon.
We’d also like to thank our guests this week - Dr. Sarah Jolley and Harper Powell.
You can read more on COVID-19 long-haulers - and the other latest stories and breakthroughs on our campus - at news...dot...cu anschutz...dot...e-d-u.
This is CU Anschutz 360.
