Theresa Freed 00:00
COVID-19 isn't your typical sickness. Some people long after they test positive are still dealing with the symptoms. On this episode hear how you can get help.
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Theresa Freed 00:23
Thanks for joining us for Joco on the Go, I'm your host Theresa Freed, a Johnson County resident and employee of Johnson County government. Achiness, difficulty breathing, coughing, loss of taste and smell. These are some of the typical symptoms you can expect with COVID-19. But for some, symptoms linger or they become dangerous, requiring hospitalization. For more on that we have with us Dr. Brandon Comfort with The University of Kansas Health System. Thank you for being here.
Dr. Brandon Comfort 00:51
Thank you for having me.
Theresa Freed 00:53
Well, over the last 11 months, here on the podcast episode, we've been podcast, we've been talking a lot about COVID-19, obviously, because this is kind of the the center of all attention lately. We've talked to some survivors about the illnesses that they've had and what they've experienced and some very serious issues. So we haven't talked recently about COVID-19 personal stories. And so I kind of wanted to share mine. And some of the pesky symptoms that I have that are still lingering. So we'll get to that in just a second. But I want to hear a little bit more about the work that you're doing, if you can share that with us.
Dr. Brandon Comfort 01:30
Oh, absolutely, Theresa, thank you for the opportunity to share this. And so at The University of Kansas Health System, we have recently launched our Long COVID Clinic. This is a multidisciplinary effort between many of our sub-specialty clinics, as well as our primary care clinics to tackle some of these very issues that you're referring to, Some of these kind of long term symptoms, or long term sequelae that many of our patients with COVID-19 are suffering from. So that's our that's the effort that we're trying to do. And we're going to tap into some of that expertise that we have here at KU. And so we're fortunate to have some just amazing specialty providers here. And so we're going to tap into that expertise to try to get our patients the best care that we can.
Theresa Freed 02:17
That's great. All right. Well, I will talk a little bit about my experience with COVID. So this is to get a little free medical advice, but also to help our listeners who might be experiencing the same thing. I've heard quite a few people are experiencing this issue. And so I thought it might be helpful to them. So my family came down with COVID in September. So it's been quite a while now. And it was first my husband who got it. And his first symptom was he had some some leg cramps, weird leg cramps, and then extreme fatigue. So he just went upstairs, watched a couple episodes of television show and came back down was completely fine. And then within a couple of days, my son just he's eight years old, he got really watery eyes. And, you know, we're in the middle of fall, you know, sort of seasonal allergies, so I didn't think much of it. And so he played soccer and went about his day, nothing really severe. And then within another day, I started feeling really achy. And that night, my son had a low grade fever. And so I thought, This is enough, we'll go and get tested. And so we both got tested. And we found out a couple days later that I was positive and my son was positive. So then my husband got tested, he was also positive. We never got our three year old tested, but he never developed symptoms and we're pretty confident he was exposed and probably had it so my my older of the two young sons recovered very quickly, the the day after he had his fever, he was fine, but for me, it really lingered. And so I felt achy for probably a full two weeks and never really had those upper respiratory issues or problems of breathing or anything like that. Within a few days of getting sick, I noticed that I couldn't smell even though I wasn't congested, which was very strange. I can remember cleaning the bathtub with bleach and not being able to smell bleach at all, which I thought was really strange. I could feel like the tingling in my my nose but I couldn't I couldn't smell it. And so that just continued and I couldn't really taste food anymore, which was strange. I tested it a lot I ate super spicy foods, I can feel kind of a burning but I couldn't taste the taste. I could still distinguish between salty and sweet and things like that but just really couldn't taste the food and so we're now five six months out from from that and I still do not have my full sense of taste and smell back and what I can smell doesn't smell right like it's a lot of sour smells and a lot of like acetone or ammonia type smells, and just very weird. And so it hasn't really recovered. And I don't have the full sense of taste back either. I can't really taste the food I still, you know, I can tell what what something is for sure if I eat pizza, I know it's pizza and I can, there are elements of that I can taste but I can't, I can't fully taste it. So that's kind of the issue. And, you know, we've heard other people experienced this sort of thing. So I just wanted to talk to you a little bit about if that's something that you see a lot of and, you know, this seems like a long time to be dealing with this symptom. Is that typical too?
Dr. Brandon Comfort 05:37
Yeah, well, thank you for sharing that. I know that's probably hard to do in a public forum like this to share your own medical story. So I appreciate you doing that. And, unfortunately, your story, you're not alone. Many patients are experiencing long term symptoms of varying degrees, some more serious than others are, are more threatening than others. One of the challenges that we're facing is that we don't have a clear sense of percentages, or how common a lot of this is, there's been a few studies published not a lot, yet, there'll be a lot more coming out, I think here in the next few months. But there's not a lot and what we do have, there's kind of wide variability in the numbers that are being reported. What we do know in hospitalized patients, so this is not patients like you. But in patients who are hospitalized. There have been a couple of studies, one out of Wuhan, China, one out of Michigan, that showed that patients with your specific issue of lack of taste or smell, about 10% of those patients are experiencing that. The Michigan study was 60 days follow up the Wu Han study was six months follow up. And so that's a fairly significant. Now we do know that patients who had the quote unquote, mild disease patients that didn't need hospital care, during the acute phase, many of them are also experiencing the same same symptoms. It seems to be a smaller percent, but we don't have a great handle on that. The good news is that most patients do get better over time. But there are a few that are tending to last for not just weeks on end, but months on end. Now, we are still relatively early in this pandemic, maybe I should, maybe that's hard to say but you know what, this has only been around a little over a year. And so we don't have any data longer than that. But we certainly see people tend to get better over time with that. There's lots of other symptoms people do experience beyond just lack of taste or smell. Fatigue is, is the most common symptom that patients bring to me. It's the most common one reported and, and it is a profound fatigue that people are experiencing. Not like, you know, I'm a little bit sluggish today. But like, I these patients can't get back to their full time jobs. You can't work a full shift, they're having trouble taking care of young families, you know, you have young kids, it sounds like some of these patients are really struggling with that for weeks to months on end. Significant quality of life impacts, lots of respiratory issues, cough, shortness of breath, cardiac complications, GI, muscle aches, joint pains, rashes, fevers, I mean, really, you name it, it seems like it's been reported these symptoms that can kind of linger for weeks to months on end.
Theresa Freed 08:32
So, so much so much to ask now. About the that, you know, I completely forgot about the fatigue that I experienced too, it was it lasted probably a month where I could sit down on a chair in the living room watching television and normally have a sufficient amount of energy but just almost fall asleep. Feeling overwhelmed with the the fatigue for sure. Luckily, that went away and the brain fog lasted quite a long time too where I just couldn't have a consistent, you know, train of thought I was very easily distracted. And I know that other people experienced that too. I feel fortunate, of course, that I didn't have the the issues with my lungs. And we've talked to somebody on the episodes here before who was having those issues where, you know, maybe she needed an inhaler, and never did before. And so why is this happening? What is it about this illness that causes these lasting impacts?
Dr. Brandon Comfort 09:26
Yeah, so Theresa, the short answer is we don't know. Just like, everything about COVID-19 has been humbling to every one of us, I think this is this is really no different. And so there's a few theories that are that are that seem to be the most widely accepted. It's being actively studied. And so there's thoughts that there's some sort of kind of dysregulation or dysfunctioning of the local kind of immune environment and some of these different organs. So if we kind of focus on the lungs For example, maybe there's some kind of localized inflammation. So just as our immune system has to be ramped up to fight the infection, it has to be kind of tamp back down, infection has cleared. And so sometimes, there may be some issues with that kind of regulation of that immune response. And so that can lead to some of these symptoms of shortness of breath, maybe some reactive airway type symptoms. So almost like asthma, and those sorts of symptoms that you had alluded to people needing inhalers and things like that. So we're using some of those same medicines that we use in our patients who suffer from asthma or COPD, or something and with their kind of pulmonary complications. So that's kind of on theory dysregulation of the immune system. There's also some thoughts that maybe there's some kind of direct, kind of like viral reservoirs or kind of direct viral involvement of some of these organ tissues that kind of maintain. So we know this with other infections. You know, like, people who end up developing shingles, for example, that virus kind of sits kind of latent in the body for years on end, sometimes decades before kind of resurfacing. And so there may be a component component of that. But the long and short of it is, Theresa, we don't know. And hopefully over the next few months to years, probably to really flesh out that biological mechanism. But we do know, I guess, when the original SARS, so if we kind of go back in time that there were similar, similar symptoms experienced by many patients during that so we expect a similar sort of thing with with the COVID-19 injection as well.
Theresa Freed 11:35
So we, of course, don't want to leave people feeling hopeless, if they're still dealing with lingering issues. So how do they get help? And what are the various kinds of ways that you're, you're assisting people with their symptoms? I mean, obviously, you're not curing them of of this, because there's not really a way to do that. But can you talk about how you can help them?
Dr. Brandon Comfort 11:54
Yeah, exactly. So, you know, the good news is, as I mentioned earlier, most everybody gets better over time. And it is usually really slow. For the people who have longer ongoing, long term or ongoing symptoms, it tends to be a pretty slow recovery. But over time, they end up having more good days than bad. And it usually kind of gets better, better on its own. Now, there's some things that we can kind of help people with. So probably one of the hardest, I'll just tackle that one right out of the gate, which is the fatigue. So number one, number one issue that people are struggling with long term is fatigue. And it's also the hardest one. And so a lot of this is just kind of helping our patients through this, we can kind of guide them through maybe, you know, some sort of graded exercise program kind of get back to their regular activities and those sorts of things. In severe cases, we'll connect them with our rehab specialists that we're working with physical medicine and rehab, and some of our colleagues down there and they can kind of help them with some of those fatigue issues as well. For our coughing, shortness of breath. As we mentioned earlier, we can use inhalers with variable success, some patients are really responding well to that. There's some breathing techniques that we can work with our patients on that kind of helps them with that subjective feeling of shortness of breath, which tends to be pretty darn common. For the brain fog and things, we've been putting our patients through a pretty rigorous neurocognitive evaluation. Most patients tend to score pretty well on that which is, which is a good thing. So we're not seeing significant impairments, but it but they're still having to suffer from some of these symptoms. And so we'll kind of work with them and with our neurology colleagues to get them back on their feet. There's smell therapy, I don't know the details on that. But one of our ENT doctors is working with some of it on smell therapy to help with that, with that, and then there's some more serious things. So I've had a few patients that have some cardiac complications, that, you know, their heart rate will just really spike up into the high heart rates, but no reason not like sitting there, it'll spike up. We've seen a couple of arrhythmias. So those are those can be a little bit more threatening, we'll send those patients over to our cardiology colleagues, we've had a couple of patients go through ablations. And that really helped with that. And so there's a there's a number of different things, it really kind of depends on their subset of symptoms. But, you know, by and large, we can help people through this. We don't have a cure yet, but we're going to we're going to keep working on our patients and other academic centers around the country. And hopefully, we can find more targeted interventions for this over time.
Theresa Freed 14:29
And of course, you know, the vaccine isn't going to cure those who've already had COVID and are dealing with these lingering symptoms, but how important is it that people get vaccinated from COVID so they can avoid these things?
Dr. Brandon Comfort 14:40
Yeah, absolutely. So the best way to not become a long haul or so to speak is not get COVID in the first place. And the vaccine is going to be one of the one of the key kind of pillars of kind of infection prevention for us. So absolutely. That is absolutely critical for our patients to get vaccinated. And then continuing to follow our infectious control measures. So wearing a mask is, has been shown to be very effective. You know, here at Kayuu, I've worked with lots of patients with COVID-19. throughout that whole time period, wearing a mask and safety glasses and those sorts of things, was able to avoid acquiring it myself and those sorts of things. We know those things work, social distancing, washing hands, we want to keep doing that even if you are vaccinated. So we want to make sure that we're utilizing all the tools that we have to stay in front of this.
Theresa Freed 15:32
Alright, so hopefully, there won't be a long term need for the long haulers clinic here. But in the meantime, if people are experiencing lingering issues, how can they get help directly from you?
Dr. Brandon Comfort 15:45
That's a great question. So with our Long COVID Clinic, right now, it's a relatively new clinic, we just got it off the ground probably two or three weeks ago. That's a multidisciplinary clinic, which adds some logistical challenges. And so we've spent the first few weeks really trying to work on our workflows, make sure that it's a smooth process for our patients. And so we've been focusing initially just on patients who have established relationship with our institution at KU. Our hope is that, over time, we're able to open that up to everybody. And so we will, they will be able to contact will have a contact number that either patients can reach out to or their primary care providers. But within the meantime, we're focusing just on our KU patients, for right now.
Theresa Freed 16:31
All right, well, that's a lot of great information, and certainly gives me hope that there's such a thing as smell therapy. I had been googling, of course, what's out there, I've seen things like burning oranges. And I don't know if any of that works. I haven't tried anything, but I will certainly look into getting some help I guess.
Dr. Brandon Comfort 16:52
Yeah. Right. Well, there, I think I think we'll have some more interventions and answers over time. These types of clinics are popping up all over the country, all over the world, really, in the United Kingdom, they have a fairly robust post COVID Clinic. And so there's gonna be a lot of great research coming out of this. So we'll be certainly paying close attention to that we can implement some of those therapies with our patients here.
Theresa Freed 17:14
All right. Well, thank you so much for joining us today.
Dr. Brandon Comfort 17:17
Thank you for having me.
Theresa Freed 17:19
All right. And thanks for listening.
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