Taking Healthcare by Storm: Industry Insights with Dr. Zeest Khan

In this captivating episode of Taking Healthcare by Storm, delve into the world of expert insights as Quality Insights Medical Director Dr. Jean Storm engages in a thought-provoking and informative discussion with Zeest Khan, MD, podcaster and former cardiac anesthesiologist.

Dr. Khan shares her journey with long COVID, highlighting the importance of peer support, symptom validation, creative treatment approaches, and trusted information sources. She emphasizes the need for curiosity and compassion in healthcare providers managing long COVID patients. 

Learn more about Dr. Khan by listening to her podcast or by visiting her website or Substack.

If you have any topics or guests you'd like to see on future episodes, reach out to us on our website.

Publication number QI-040425-GK

Transcript

Welcome to "Taking Healthcare by Storm: Industry Insights," the podcast that delves into the captivating intersection of innovation, science, compassion, and care. 

In each episode, Quality Insights’ Medical Director Dr. Jean Storm will have the privilege of engaging with leading experts across diverse fields, including dieticians, pharmacists, and brave patients navigating their own healthcare journeys. 

Our mission is to bring you the best healthcare insights, drawing from the expertise of professionals across West Virginia, Pennsylvania and the nation.

Subscribe now, and together, we can take healthcare by storm.

Hello everyone, and welcome to another episode of Taking Healthcare by Storm. I am Dr. Jean Storm, the Medical Director of Quality Insights. And I am so very excited to be joined by our guests today. I am joined by Dr. Zist Khan, Cardiothoracic Anesthesiologist, Executive Coach, and Passionate Advocate for Individuals Affected.

Dr. Kahn's personal journey from practicing medicine to becoming a long COVID patient herself gives her a unique perspective on this complex condition through her work, including her podcast, Long COVID MD, which I highly recommend I listen to regularly, and I am not an individual who has been diagnosed with long COVID, but I am inspired by her words in her podcast episodes, Dr.

Kahn bridges the gap between the medical community and patients offering valuable insights, support, and most importantly, hope. So today we're going to be talking about the latest research around long COVID, the importance of peer support and the role of physicians in validating symptoms and reducing stigma.

So I am so excited to jump in. Dr. Khan, Zist, we're going to be calling each other by our first names today. Thank you so much for joining us. Thank you for having me on. Thank you for inviting me and thank you for that wonderful introduction. I feel like, who is she talking about? And it's me. That's great.

Yes. So you have made a remarkable transition from practicing medicine to advocating for long COVID patients. Can you share a bit about your personal journey from being a physician to becoming an advocate and patient yourself? Sure, it is a journey I did not anticipate, nor did I ever want, but I am okay trying to fill some of those shoes.

I am an anesthesiologist, as you mentioned. I live and work in Central Northern California. And in 2020, my agricultural based community was hit really hard with COVID, and our hospital swelled with patients. We often had overflows, and we had outbreaks of COVID, unfortunately, among hospital staff.

I, as an anesthesiologist, work very closely in people's airways, so I get a lot of respiratory particle exposure. And in the middle of 2020, I started developing what you might hear is a strained voice. I thought maybe I was having an effect from wearing N95s, but then I looked around and realized nobody else was.

struggling with this. I have a history of allergies. And so I'm used to having respiratory symptoms every now and again, especially depending on what's being harvested at any given time here in central California. So I didn't think too much when I fell ill in early 2020 or like the spring of 2020.

But then I started developing symptoms that increased in severity. And literally debilitated me, so my voice was one my asthma, which was very mild before, and like I said, pretty linked to the harvest became intolerable, I couldn't lie flat anymore  I real difficulty breathing. My heart rate raced.

I felt dizzy and more than all of that. I felt extremely fatigued and I chalked up the fatigue to the asthma or the difficulty sleeping, but it became undeniable that multiple things were happening at the same time and by the end of 2020, I had decided, okay, I'm going to keep working until the spring and.

 Then I'll take a little time off. I'm probably overworked and I just need a little bit of a break. Well, before I hit my own deadline, I essentially collapsed.  I left the hospital after a pretty routine shift. I tried to walk to my car and I couldn't make it. I felt like my legs were made out of cement and I did not have energy to continue walking.

So I rested on a patch of grass and asked an orderly who was dropping off a patient in the front of the hospital to help get me to my car. And I got some help getting home that day and I didn't return to My medical practice. That was March of 2021. The year that followed was very challenging and very scary.

I was bed bound with fatigue, unbearable headaches asthma continued or the pulmonary issues continued. Dizziness continued. I was close to passing out multiple times. I couldn't stand up straight and  my voice was completely gone. It was a non medical person, someone who had no medical background, who I was connected to, who told me, Hey Your symptoms are really similar to mine, and I was hospitalized for an acute COVID infection.

Do you know about this thing called long COVID? And my answer was no, initially. And with her help, and  the help of my little community, I started to learn that I was probably suffering from a post viral illness that has become chronic that many other people who develop a viral infection can develop too.

And so the one that has developed after COVID is called long COVID. Colloquially, you guys know what I'm trying to say. And Scientifically, it's called post acute sequelae of COVID, and it has a couple of other names as well. But long COVID is what it's commonly called. And my life has completely changed.

So, as I've developed or regained some energy and some capacity to sit and think and talk, I have pivoted my focus on Caring for or supporting other patients who also have this really confusing disease. And trying to figure out how the healthcare system that we currently have can offer benefit to me and to others.

Yeah, and I think it's really  says something that it was another individual who had a diagnosis of long COVID who kind of, pointed you in, in the direction of your own diagnosis. So  given your unique perspective as a healthcare professional and a patient with long COVID, can you discuss the importance of peer support for individuals who are suffering from this condition  and how it can help in their recovery journey?

Gosh, peer support is key to health in general. It is certainly beneficial to people who have severe diseases, to people who have chronic diseases. And  my peer support group has grown. Tremendously. I'll talk first about the little circle that I have in my personal life, which is my husband and my family and my immediate friends.

Our relationship dynamics have changed to say the least. We don't realize sometimes how our relationships are impacted by our. Abilities  what is my daily schedule, what are my capabilities, what am I bringing to this relationship, and what are sort of the patterns that have developed in the give and take of each relationship.

So I really focused on a couple of really important relationships and tried to lean on those people who I could rely on. At the same time, trying to make sure that they were not getting overloaded, because caretaker fatigue, as Jeanne, you very well know is very draining and real and  needs to be prevented or treated in order for both parties to basically continue living with one another, however you want to define with.

 But. So that's my  central core of peer support. Outside of that, I have met the most remarkable people who I would never have met if I had not become sick. I'm talking about others who have long COVID who are sharing their experiences predominantly online because we are unfortunately isolated.

We are oftentimes bed bound by this condition and we can't really meet one another in person.  So this community that has developed on social media platforms has been so helpful for me to receive validation that even if my doctors are confused by what's going on even if I'm confused and I'm doubting myself there's other people who have experienced this.

I might be isolated, but I'm not alone. And, gosh, I can't thank other people enough for being willing to share their story because it has this tremendous ripple effect. So I have great long COVID friends and I have new  chronic disease friends and I have new friends in the greater disability community who have been so generous teaching me and others, Hey, this is how you navigate life in a world that is not designed for you.

 Here's how you thrive. So it's been really important. And I'm so grateful that I can lend a voice in that community too.  I agree. I think. I think about health care moving forward, and I think the future is community. So that, yeah, yes. So you talked a little bit about your physician. So I, many individuals feel report feeling dismissed.

There's a lot of stigma. They feel invalidated by their health care providers. Why do you think it's critical for physicians to validate symptoms and experiences of long COVID patients? Because many people might say, well, you know, who cares if they validate the symptoms, you still have them, but  it's very important.

So  how can this education help reduce stigma around long COVID? Yeah, there's a lot there. And what I think we don't realize as physicians and other clinicians, we don't really. understand the intensity of the power that we hold in the patient physician relationship. Even if you, as I think of myself, as an empathetic person, as someone who has really tried to have a good bedside manner.

There is an imbalance in the power structure between physician and patient, and clinicians are gatekeepers to care. So, why is it important for medical providers to validate these symptoms? One, it is the first step into improving patient outcomes. Right. It is responsible health care. It is utilizing our health care resources effectively and by ignoring symptoms that we as clinicians may not have been educated on, that might be confusing or challenging to us  we're taking It can be a really big step  and it can be a scary one to take.

So above all  patient outcomes depend on validating patient's symptoms. Secondly, we all know there has always been some suspicion of physicians by patients, and that has That gulf has widened tragically since 2020 and the pandemic, I think. People en masse are grieving, they have been traumatized by the way that the COVID infection or the pandemic has impacted them, that could be  many ways, and we don't have, we're not that great about allowing ourselves to grieve in our culture, and so that grief, I think, understandably, Has taken the shape of anger and distrust and there's a lot of distrust against clinicians these days, and we see the ramifications of that in The general population being less willing to support measures that benefit us as physicians, measures that we clearly need to maintain a healthy and robust healthcare system.

We see physician burnout at, that was high to start with, going even higher. It's even higher now, post pandemic.  We have people with large platforms saying that the reason that healthcare costs so much is that doctors are greedy. And if your personal experience with a doctor has been negative and one that demonstrates this huge power disparity, even if it's perceived.

That person's not gonna try to, like, go to bat for you. So, we need a United front, and we need to bridge this gulf, and the first step of that is clinicians extending grace to their patients and being willing for the first time, because we are not taught this, being willing to say I'm puzzled by the symptoms that you're presenting with.

This isn't something that I can easily identify. Then let's go from here, saying that statement or admitting that this is challenging clinically is something that we are not, we're actually discouraged from doing in our training, and it's hard for physicians to identify. Oh, now is the time. For me to be a little bit more of a show some vulnerability to my patients and it's not going to be seen as a weakness on my part is actually going to bring us closer together.

I hope that answers the question somewhat. Oh, it absolutely does. And I love the idea of extending grace to our patients and really. Letting them know that maybe we're not sure what's going on. Yes. So you are deeply involved as we've said in the advocacy space for Long COVID. Can you update us on some of the key research areas that are being explored?

Potential breakthroughs or not on the horizon. Yeah. I want to take a big deep sigh here because it is hard to anticipate or be hopeful that some cure with a capital C, like the cure is on the horizon. And currently with changes in NIH funding It's a little even more discouraging pharmaceutical companies usually invest research at a point where basic science demonstrates a target for intervention.

And they're not as willing to invest  huge sums of money. into basic science work. That is where NIH funding really comes into play. And so I'm not sure how research for long COVID is gonna change in the next few years. But what we have, I think, as a research community, I speak as if I'm part of it, but keeping tabs on it, it does seem that Has a clearer focus of direction, even if we don't have answers yet, so one area of interest is, of course, what is the cause of long COVID?

What is that? What gets triggered by a COVID infection that causes these long term symptoms? One theory is viral persistence, or basically the virus never goes away.  We see the chickenpox virus, for instance if you're someone in my age group or older, you might have had the chickenpox when you were younger, and it resolved, but it never really went away.

It's still living dormant inside you potentially, and it may reappear later on when you get an immune system hit. And it gains enough power to present a shingles.  So it's the exact same virus that you got when you were younger that presents again when you're older. So is the same thing happening with long COVID?

Is this something that is caused when the acute infection does not fully clear? Another theory is the, did the virus trigger a particular immune response that needs to be then shut off somehow, and if so, why did it? How does it turn on? How do we shut it off? These are huge questions, but at least there is some direction.

Another big sort of area of interest and debate is, do we categorize long COVID as a completely stand alone unique disease? Or do we build on what we know of other infection associated chronic conditions, IACCs? So these are things like infectious mononucleosis.   We all have that stereotypical idea of a college kid who gets mono and then they're in bed for a few months.

That's prolonged fatigue. That is very similar to the symptoms I developed after getting sick myself. Do we lump these? Diseases together and study them as a cohort, or do we isolate long cove it and study it them by itself. There are pros and cons to both of those arguments, but I think, and I hope there are enough scientists willing to study each type and the hope is also that if we get some answers for long COVID, maybe we can apply what we find to other conditions that puzzle us like post infectious mononucleosis about 25 percent of college kids who develop mono end up with a very similar condition to long COVID.

MECFS, and that stands for myalgic encephalomyelitis or chronic fatigue syndrome, MECFS, about half of people who have long COVID. Meet criteria for MECFS, which is a long term condition  that has chronic fatigue that's not explainable by other things neurologic manifest, manifestations like confusion or cognitive impairment.

So I have hope, but what I would for finding more getting more insight into what the cause of long COVID is and hopefully targeted interventions for it. For now, my little corner of long COVID advocacy. Is what do we know so far about the symptoms that present with long COVID and how, what do we know, what do we have, what tools do we have to treat those conditions so that we can reduce patient suffering?

right away and improve their function while we wait for all of this science to continue. I love that, and I think that's such a wonderful way to think about things. Let's reduce suffering now. So, you gave us a lot of information but I know I've seen on social media and on the interwebs that there is a lot of misinformation about COVID in general.

So a lot of information about long COVID. So what are some trusted sources of information and support that you recommend to others and health care providers trying to navigate the complexities of the disease? Yeah, there certainly is a lot of disinformation and people share information that they think is true, too, so  some is sort of self serving and other types of that information is because people are trying to share information with others.

Social media in general is not a super reliable source of information but it is a source of creative thought and creative approaches. And so if you take it with that use it with that intention it can be really useful, especially for patients as like a support.  But  reliable information sources for clinicians.

 Include the NIH's RECOVER website, RECOVER is an acronym  and it's an initiative that is funded to support long COVID research in particular. They have a nice website, they have a bunch of studies that have been funded. We don't have huge answers from the RECOVER  initiative yet, but it is ongoing.

A similarly funded government agency is called AHRQ  I think it's  Healthcare Quality is one, it's also an acronym and they are focused on  funding. funding.  Clinical research, like how do we implement what we know to improve patient outcomes? So those two sites, and I can share the information for your listeners, the links are pretty good starting places.

And another really great one for like nitty gritty, what do I do? What does this mean? is called Project ECHO.  ECHO, E C H O, is also an acronym, I don't have all the name for it, but it's a, it was started, it's an initiative that was started at the University of New Mexico. Which is a state that has a lot of land and maybe not a lot of specialists.

And so it can be hard for primary care providers to get their patients referrals to specialists. Project ECHO was started before the pandemic as a way to educate primary care providers in particular. About specialty diseases by specialists. So it's like using telehealth. Health technology for medical education when the pandemic hit project echo was utilized to teach people the most updated approaches to care for COVID because you might have remember, you might remember at that time, I don't know about you, but I was like texting friends from the East Coast.

What are you guys seeing? What vent settings are you using? How are you using oxygen? When are you deciding to intubate? What meds are you using? And the, those approaches were constantly changing as the, in the early days of the pandemic. So Project ECHO was an established way to do that. Since  that time Project ECHO is being used in part to help increase medical education for post viral conditions.

I was very honored to be invited to give a talk on how to approach patients with long COVID. And there are many recordings that are free and available to clinicians who Want to learn a little bit more about the conditions associated with long COVID. So there's a lot out there produced by people who recognize that Their little specialty of complex illness is not one that is going to be taught by training programs and there's not a lot of CME available outside of that. So Project ECHO is what I would recommend to most healthcare practitioners who are interested in learning more. I would, I'm going to say I ECHO.

Project ECHO. I mean, I ECHO. I first learned about it as I actually participated.  I was lucky had the opportunity to participate in education for nursing homes during the pandemic. And it's a, just a wonderful platform for education. And  I've been installed there long COVID resources and they're just fantastic.

So. I highly recommend them. So you have shared your approach to managing crises and optimizing outcomes. So how can individuals with long COVID apply your crisis management strategies to better navigate their health challenges and improve their overall wellbeing? Yeah. You know, I think about crisis management quite a bit because as an anesthesiologist, we train.

In crisis management you do the same thing in er and we clean a lot from Aeronautical safety methods the first priority is how do you prevent a crisis when you're literally doing dangerous things? And then the second is how do you navigate through a crisis once it's in front of you? This idea Of approaching my own health the way that I approached my patients that I took care of who had a lot of complex, life threatening illnesses all at once, was the key to my ability to use healthcare to recover.

So I think about it in general as, MacGyver, like if you remember that show, MacGyver, number one was always in a crisis, always in a pickle. And that's what you tuned in for and he found a way to save himself or navigate through it using the resources that he had at hand, which were always limited.

The third thing is that he was able to do that every episode by staying cool and composed. And so, that's not easy to do. In medicine, when I was dealing with somebody who was crashing or like close to having a cardiac arrest, the very first thing I would do is take a deep breath and exhale. And focus, like what is happening right now?

Let's identify the problem at hand. Then let's identify, what do I have available? What do I know about these tools and this condition? And that's pretty much what MacGyver was doing too. It is very difficult to apply that when you are so sick and in pain and your brain doesn't work because I, like many others, have cognitive impairment.

So it's super helpful for healthcare providers to be a collaborator in that process. What is the problem? How can we focus? What are the resources available to us? And even if we're using the resources in an atypical way, which of these resources could help us right now? And that's what crisis management is to me, and that's how I've approached my own recovery.

I love that analogy about MacGyver and I am going to remember it and put it in my back pocket. Yeah, best haircut on TV. So, last question, looking ahead, what do you see as the future of long COVID research and treatment? Is, are there any treatments or approaches that give you hope for long term management of the condition?

Long COVID, according to the National Academies of Science, Engineering, and Medicine, has about 200 symptoms that it might cause. And long COVID patients present with any number of, or any combination of those 200 symptoms. So what I think is necessary is for health care providers, To start thinking more with curiosity, to start being comfortable with uncertainty, and learning how to move and take action when there are no established evidence based guidelines to guide us.

My hope is that we develop some evidence based guidelines that can empower providers to, to care for their patients, but what I see right now is reasonable, like, understandable uncertainty and hesitancy among providers to try me. Treatments. There are no FDA approved treatments for long COVID right now.

So everything you prescribe is going to be off label use, and that's okay. It's okay because The indication for that treatment does not have to be long COVID. The indication for using an anti migraine medication could be headache. Indica You know what the indication is for using a beta blocker. We know the safety profiles for a lot of these drugs, and we are You know, we need to be a little bit more confident in being able to apply the resources, like I said, our little toolbox.

We need to be able to open that toolbox and say, okay, here's a hammer. I don't have a nail in front of me, but I think this could be useful for X, Y, and Z. So that's where my hope lies in.    I'm not as hopeful that we're gonna find an ultimate answer. I am hopeful and tr and I trust the intelligence and capabilities and the intention, like the sincere intentions.

of health care workers in this country. We want to our patients and we get upset when we feel we don't have anything to offer. What I hope is that we get to a point where clinicians feel comfortable. Offering help even if it's not a guaranteed fix. Because our goal should be reducing suffering, improving this patient physician relationship, and moving forward.

This is a, we're in this for the long game. Absolutely. Those are just, I almost I was, tearing up. Wow. Those were wonderful words and I'm sure you are giving comfort to individuals who are listening out there and who are maybe I feel like they're suffering alone. So very useful. Zees, Dr.

Aziz Khan, thank you so much for joining me today. I thoroughly enjoyed the conversation. If individuals want to hear more about your work, learn more about their, your work, where can they do that? Sure. You can find me at, my podcast is called Long COVID MD, and it's available on all the streaming services.

My website is longcovidmd. com. It's an okay site for now, but it's going to get better where I post a lot of my content is on Substack. Not everybody's familiar with Substack, but it's just another website and you don't need to sign up for it. longcovidmd. substack. com. You'll find links to all of the podcast episodes and all of the summaries and essays that I write trying to make long COVID a little bit more understandable.

Yes. And you do a good job at that. And I highly recommend Dr. Khan's Substack. I read it and highly recommend it. Zist, thank you so very much for being with us today. Thank you. Thank you for inviting me and for such a wonderful conversation. 

Thank you for tuning in to Taking Healthcare by Storm: Industry Insights with Quality Insights Medical Director Dr. Jean Storm. We hope that you enjoyed this episode. If you found value in what you heard, please consider subscribing to our podcast on your favorite platform.

If you have any topics or guests you'd like to see on future episodes, you can reach out to us on our website. We would love to hear from you.

So, until next time, stay curious, stay compassionate, and keep taking healthcare by storm.