Transcribe your podcast
[00:00:00]

You. They did a CT scan and my doctor, he was like, this is maybe a 50 50% chance of survival.

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They finally, like, allowed me to let the kids in for one afternoon. And I just remember being like, I've got to take a bunch of pictures because I'm not sure if they're ever going to be able see them again.

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If we don't get people the necessary treatment early on, it can impair your physical and mental health.

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I was in shock. Can I fight this? Can I beat this? Is this something that's going to just change my life completely? Are these my last days?

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How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming? What if that enemy was coming from within a disease that even doctors couldn't identify? Nearly half of all Americans suffer from some chronic illness and many struggle for an accurate diagnosis. These are their stories. I'm Lauren bret Pacheco, and this is Symptomatic. So tell me a little bit about you as a person beyond a husband and a dad. What are your favorite Hobies? What are your passions? What do you love to do?

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So I love to sing, I love to dance. I used to play the cello and have on occasion, brought out my cello to practice a little bit. I love sports, particularly basketball, so I love to play basketball whenever I get a chance, as well as watch the NBA, WNBA, college basketball.

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Gerard Green also loves sharing his passions for basketball and music with his four year old daughter and six year old son. What's your go to karaoke song?

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Oh, my gosh, I've been trying to figure this out. I'm pretty down with anything. R B. My favorite group of all time is Boys to Men, so I often lean into them for music inspiration.

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I also love Usher, a quintessential dad striving to be in the moment with his kids as much as possible. And even though he's now only 31 years old, he has the calm and coolness of someone much older. Just ask his wife, Courtney.

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Yeah, Gerard is like the king of chill. He is so relaxed. He's pretty much like an unshakable person. In college, everybody is like, oh, yeah, he's definitely a pothead. And Gerard is actually like, stone cold sober, straight edge by choice. He just brings that ultra calm presence to anything that he does, but also, like, the most compassionate, caring person. So he got a social work degree, has worked in higher ed, cares so much about his students and the people that he served in the past, and now does diversity work for children and family services. So everything that he does is just like, with that servant heart.

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Courtney and Gerard had been together since high school, both growing up in Minnesota. They first noticed each other at a Crosstown football game and instantly became friends. That friendship quickly turned into dating and prom and eventually into a lifelong partnership.

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She's my best friend. I feel like I can talk to her about anything, go to her with anything, which is really meaningful, and I'm glad that our relationship is built on that.

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And Gerard would undoubtedly need that support as a mysterious disease turns his life upside down in the span of just a couple of months. By the middle of 2020, at the height of the COVID pandemic, gerard started feeling new sensations that he'd never recognized in his body before. All of his instincts warned him that something was wrong. Will you tell me the first time that you realized you had something that you would have categorized as a symptom?

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Yeah, so it was gradual. I would say that my experience with symptoms is very hindsight in the moment. It wasn't like, oh, there's something really wrong with me. At least at the beginning stages, I had allergies or what presented as allergies stuffy. I was coughing a lot, my throat was itchy, and so I just took allergy medications, hoping that it would go away.

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At the time, Gerard did live in South Carolina, where allergies were a pretty regular thing for him. He tried brushing it off, but the symptoms would linger.

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After a few weeks, things hadn't really improved. And so that's when I started thinking, there's something going on here. I don't know what it is, but usually when I have allergies, they're gone after about a week. So now that it's been several weeks, I tried switching allergy medication to see if that would help. It didn't. And actually things started to get worse. My appetite was starting to wane a little bit. That's when I was like, you know what, I need to probably talk to someone about what's going on.

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Amidst the consistent coughing and congestion, gerard was also juggling, being a father of two young kids, studying for his doctorate, and working a strenuous full time job. You're in school, you are working incredibly long hours to provide for the growing family that you have. There was a lot on your plate. And how does that impact the time you take for yourself and your health?

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What time? I guess that's how I answer that question, is there wasn't time. I wasn't taking care of myself. I wasn't taking care of my health. I was really just in autopilot survival mode. I did the basic minimum to stay afloat and stay alive. And that was my main focus, was, I'm going to eat lunch because it's something I need to do.

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Just shortly before he got sick, he was like, up in the morning, leaving for work at work, would finish work, was doing a student activity or something until seven and then needs to go to class and doesn't get home until 1030. And all throughout that time, I'm trying to text him, like, hey, don't forget to eat something. Hey, are you drinking any water? Just like the self care was just not present because he was so, so busy.

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What's going on in terms of your personal professional and world at the time that your symptoms are getting worse?

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Yeah, so personal. I think it's the culmination of work stress, being in a PhD program family and really trying to balance all of those things. Another piece is the diagnosis of type two diabetes and having that weird sensation of slurring of words and feeling unwell. And then in February of 2021, my dad was also diagnosed with type two diabetes. And he found this out because he got COVID and was admitted into the ICU for about two and a half weeks. And he got really sick in the ICU, and they were thinking that they would have to put him in a medically induced coma. And I know that so many people don't wake up from those things. And so I think the stress of my dad having a near death experience was also taking its toll.

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It was really difficult for everyone. And then I'm at home with two small kids trying to support my in laws who are going through this giant health issue as well. And it's just like layers, layers, layers, layers, layers. And on top of that, we're like trying to ever eat a meal as a family in a calm way or trying to ever just get time together, he and I, and remember where we come from. Right. Like, this is such a cool, beautiful love story, but when you're in the thick of all this weird stuff, it's hard to remember that.

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His dad would recover from this life threatening battle with COVID but it was a harsh reminder of how little time there can be left with the ones you love. The stress triggers continued to pile on Gerard. At this point, he was working vigorously in the Department of Diversity, Equity and Inclusion for the Minnesota court systems.

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And at the time with my job, they were overseeing a very high profile trial related to the murder of George Floyd. And up until that point, I hadn't seen any videos, I hadn't seen any surrounding information. I tried to keep some distance because that imagery of black people being brutally murdered or experiencing violence is one that I tried to avoid. And working for that organization, it was hard. And instead of processing my own feelings, emotions, and pain around it, I was helping other people do that for themselves.

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He couldn't get away from work because his work was front page headline news every single day.

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Every single day. We had, like, a small bedroom that he had a desk shoved in the corner. So, like, Court TV was just on in our bedroom all day long. And then trying to just be a person on the planet still where this is all that anybody's talking about. Between this trial and COVID and everything.

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Else under the suffocating stressors, gerard's symptoms would quickly begin to escalate. In addition to the shortness of breath and sore throat, he was now having trouble keeping food down, and he would wake up in the middle of the night struggling to catch his breath. When did you decide, this isn't normal? I'm going to the doctor.

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Exactly.

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I actually did doctor on demand a couple of times and consulted with them. And at that time, they would often prescribe steroids or antibiotics to see if that would help, because they were thinking, something's wrong. Maybe you have post nasal drip. I also got an inhaler with them because this is about the time where I was having some issues with breathing and having a lot of shortness of breath, especially at night. So then I called them again. They prescribed another round of steroids and antibiotics and then were like, you should follow up with your primary care doctor. And when I did, they gave me more steroids. And we're like, we don't really know what's going on.

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I should imagine that it was just masking the real issue.

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Absolutely. And probably worsening the issue as well. It was a few weeks after that where I had to just leave work. I couldn't really eat anything. My head was hurting, and I was just down in that moment. And so that's when my wife was like, something's wrong. You need to go to the emergency room. I think in that moment, I was just thinking, what's happening? Am I going to feel this way forever? What does this even mean? What is this coming from? So it was just a lot of questions about my physical health.

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So what happened once you got to the Er?

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They did a basic metabolic panel, saw that my numbers weren't astronomically in the yellow or the red, and were pretty much just like, we don't really know what's happening with you, so I guess follow up with your primary care, but there's not really much we can do for you. So I went back home. And so I think that it was just a combination of acute situations that were happening in that moment, and then just a lifetime of trauma, stress, racism, poverty, and other factors that I think really created this perfect storm. And that's just how my body reacted.

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Gerard couldn't keep up with the symptoms, which kept piling up. He had very little appetite. Normal everyday activities like playing basketball with his son were now becoming nearly impossible. And at nighttime, his breathing problems worsened to the point where he could barely sleep, if at all. So what wound you back up in the Er again a few weeks later? What's going on?

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We were living in an apartment at that time, and my parents were coming by to have a cookout with us. And so I was still not feeling great, but I felt a little bit better that day. So I was able to go down to the area by the pool where our shared grill space was and sat in one of the chairs with my family.

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And then by the time he got there, he was just, like, slumped over and just could not catch his breath.

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That walk felt very tenuous. Like, I struggled a lot and it wasn't that far of a walk. Like, shimmy out of breath. I didn't feel well. We had some beyond burgers, and I think I ate half of one of those burgers and maybe a couple of chips, and I was able to get it all down. So I thought that things were improving and going better. And then I remember maybe 30 minutes later feeling horribly, so I went and laid down.

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I had to drive him, like, the half a block it was from the barbecue pit area back home.

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It didn't get better, and then I ended up throwing up the food.

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Gerard is, like, the persistent optimist. So for him to be saying, like, I don't know, I just don't think it's going to get better, worried it's going to be like this forever. This is just not typical. He has, like, a nickname that he's the quicksodic one, like, the one that's just painfully optimistic, almost to the point that it's nonsensical.

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That's when my wife and my parents were like, all right, I think you need to go back to the Er.

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Rushed to an Er, the fearful couple was at the end of their rope, managing Gerard's symptoms without a proper diagnosis.

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His blood oxygen started to decrease. His heart rate was increasing. We were not seeing any improvements. Nothing was getting better. It was only getting worse. I just came with, like, an agenda of things that I wanted tested for. I was like, is this an autoimmune issue? Are we talking about lupus? What's going on with why he feels like he can't get a good breath? Is there something going on with his lungs? Can we do a scan of his lungs?

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Courtney was prepared to advocate for Gerard something he was in no condition to do himself. But even as they scrambled to make an action plan, which was complicated by the fact that they were in the middle of a pandemic, the doctors felt like there may not be much time left for him.

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They finally allowed me to let the kids in for one afternoon. And I just remember being like, I've got to take a bunch of pictures of this because I'm not sure if they're ever going to be able to see him again because it's COVID. So they're making a one time exception for them to come in and see him.

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How are you keeping a brave face with him?

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I just left the room a lot. Like, I would just be like, okay, I'm going to grab some snacks. I'll be right back.

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And what would you do in the hallway?

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Just sobbing. I would go to the little chapel that they had there. We have a Christian faith and I would just sit there and be like, what's going on? We've answered your call. We are taking care of this family just as we feel we've been called to do. And now, what?

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With Courtney's fierce advocacy, the doctors finally do a CT scan, which would hold the necessary clues as to what was causing Gerard's rapid health decline.

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So when I finally got the CT scan, I mean, nothing could have prepared me for what information would come back from that.

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We'll be right back with Symptomatic, a medical mystery podcast.

[00:17:25]

Hi, I'm Cindy Lauper. My scalp was covered with psoriasis, which could lead to psoriatic arthritis, but Cosentics treats both.

[00:17:33]

Cosentics ecukinumab is prescribed for adults with moderate to severe plaque psoriasis, 300 milligram dose, and adults with active psoriatic arthritis, 150 milligram dose. Don't use if you're allergic to Cocentix. Before starting, get checked for TB. Serious allergic reactions, severe skin reactions that look like eczema, and an increased risk of infections. Some fatal have occurred. Cosentics may lower ability to fight infections, so tell your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle aches, or cough, had a vaccine or plan to, or if IBD symptoms develop or worsen. Learn more@cosentics.com or 1844 Cosentics cosentics works for me. Ask your doctor about Cosentics.

[00:18:11]

Now back to Symptomatic. A medical mystery podcast. Gerard Green approached most of what life threw at him with a smile, juggling a full life at work, in his PhD studies, and at home as a proud husband and father. But rapidly, the symptoms of a perplexing condition landed him in the emergency room, hoping to find answers before it was too late. What were your biggest fears in those moments?

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There are so many fears that are so layered. It's like, what are we doing here, right? Like, is he going to have to stop working? And my persistent fear was like, what are we going to do to get him the care that he needs?

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Through fear and confusion of her own, courtney continued to show up for Gerard when he needed it most, pushing for answers until the doctors found the clue they were looking for. On a CT scan, they found that part of Gerard's spleen had died off because of a blood clot. Seeing the blood clot led the doctors to order an echocardiogram to get a better picture of the heart.

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And that's when they found that I had not only a reduced ejection fraction, but also enlargement within my heart as well. And that's when the doctor later came in and diagnosed me with congestive heart failure. I didn't know anyone with heart failure or even heart disease. I didn't really know what heart failure meant to me. It's such a dooming term to call it heart failure. Like, my heart has failed, and that means maybe I'm not going to make it out of this.

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His doctor said, you have heart failure. It's very significant. It's very severe. Your heart is almost nonfunctional, and it's really bad. So we think we should transfer you to Greenville, which is, like, the next biggest town. I'm just sitting there silent, crying, trying to ask questions about the practical reality about what that means, because you're saying heart failure. I don't know what that means. That doesn't mean anything to me.

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My doctor at the time, who's not a heart failure specialist, he was like, this is maybe a 50 50% chance of survival, and that you probably should start looking into long term disability and maybe look to stop working because this is going to be a long road for you.

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I can't imagine how frightening and difficult that must have been. It must have been like waking up into a nightmare.

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Yeah. And so at the time, I was in the hospital thinking, is this going to get better? Can I fight this? Can I beat this? Is this something that's going to just change my life completely? Am I not going to make it out of the hospital? Are these my last days? And so it was a really tough and stressful time, and part of me was in shock, and part of me, I feel, couldn't even bring myself to process that information.

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And I was like, how are you feeling? And he was like, I just don't even really know. And that was like, the first time I saw him cry in the whole process. And I just don't think there was anything worse that could have been said to Gerard, like, this devoted husband and father than, like, 50 50 chance.

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After terrifying months of uncertainty, gerard and Courtney finally had a name for the disease that had flipped their lives upside down congestive heart failure. But they were still left with many unanswered questions. For people who don't know, can you just break down, by definition, exactly what congestive heart failure is?

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Yeah. So our heart has many different things.

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It does.

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I often talk about it as plumbing, which is the arteries. That's where we have heart attacks. And then we have electricity, which is the way our heart beats, and then we have the structure of our heart. And that's where congestive heart failure comes in.

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That's Dr. Courtney Jordan Beckler, the medical director of health, equity and health promotion at the Minneapolis Heart Institute Foundation.

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So when the blood goes into the heart and then comes out, the percentage of blood that goes in versus going out, that's called our ejection fraction. And that's really the pump of the heart. 55% of that blood volume is what we consider normal. That's a normal functioning heart. So it's something you don't want less and you don't want more. And so there's all sorts of definitions, but for sure, less than 45% is when we start to classify mild heart failure. It's more severe at 35% and then very severe at 25%. And under is more advanced heart failure.

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How can congestive heart failure impact people's lives.

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Heart failure, if we don't do anything about it, on average, 50% of people will die in five years. And so it's a big deal. It can be an end stage process in terms of death if we don't get people the necessary treatment early on. And I think importantly to many of these conversations, it can impair your physical and mental health.

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Are there things about his specific case also, just in terms of his age that might have made a quicker diagnosis more difficult? What stuck out as unusual?

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Yeah, really great question. I think that because Gerard is a little bit younger, we often think about heart disease impacting people only when they get old incorrectly. In fact, one of the fastest growing demographics of heart attacks is women aged 35 to 45, which a lot of people don't know. But the point being, some of these types of statistics take a long time for physicians to start to pick up on and see that gosh. We're seeing, unfortunately, some of these diagnoses at younger and younger ages. So I do think, unfortunately, that was one of the challenges with Gerard's diagnosis, is that had he been older, we would have been more likely to think of that faster. It's definitely not an excuse, but I think that is a reality.

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Gerard was only 29 years old when he was diagnosed with congestive heart failure. Unusually young for someone to experience such significant cardiac issues. He was put on a regimen of medicines and also given a life vest, a defibrillator he needs to wear constantly in case his heart has to be shocked back into a normal rhythm. Though he had an answer for what had been plaguing him, in many ways his diagnosis only opened the door to a host of new questions.

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What does this mean for my life and my family? If I do have a 50 50% chance, does that mean I'm not going to make it? And if not, what's going to happen to my family at that point?

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Wow. And I mean, talk about an undiagnosed illness, an enemy from within. How did you feel about your own heart, about your own body in that moment?

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I guess I just was thinking, what did I do to fail my body? Or what did my body do to fail me? And it's hard to not think, what's wrong with my heart? Why did this happen to me? Is it because of something I did or the ways I'm not taking care of myself? And in some ways, I think that I wasn't set up or positioned well in a lot of different arenas to do that. But I think that I had a lot of self blame, was like, how did I let it get to this?

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At this point, you at least had the life vest to help you, though.

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The life vest, it was helpful, but it's not perfect either. It would beep in the middle of the night and I'd have to readjust it. The first time that it beeped was terrifying. So it's like, oh, no, is something happening? It ended up just being that the pads just need to be shifted, but it was also just hard to live life with this five pound battery pack attached to my body at all times.

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His kids were only two and four when he was diagnosed. So much of their lives are ahead of them. The gravity of what this meant for his life was constantly on his mind. The search for a new normal is what led him to the Minnesota Heart Institute and his relationship with Dr. Jordan Beckler. Where was he in his diagnostic journey when he first crossed paths with you?

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So he had already been formally diagnosed and was actively on his treatment plan, but I think he was in a place where he was able to kind of look back and think about how things might have been different in his journey with different additional help and opportunities along the way from the health system. So I think from a traditional treatment perspective, he was getting what he needed. But what he was specifically reaching out to us about is some of the social support. We can't disconnect our head from our body. We are whole human beings. And unfortunately, as I'm sure many of your listeners know, sometimes in the way healthcare is practiced now, we do that. So I think that what Gerard was looking for in part, was that it took, I believe, seven months for him to hear back from a social worker and just navigating different changes in his life that he was planning to make with work and family and figuring out what that looked like living with a chronic disease. I think that was what he was hoping to get more of.

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So she's very steeped into heart failure and health as it relates to women, people of color, and also thinking about the environmental factors that impact people's health. She's really just been a great thought partner and is a leader in this space and someone who I have been able to go to to get feedback, ideas, recommendations, and just general insight into better understanding heart failure more deeply.

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How important as a doctor is taking into account the environmental factors and stressors that a patient is dealing with on a daily basis?

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So it's critical we know that up to a third of all cardiovascular disease is caused from poor mental health. And that includes things like social isolation, anger, stress, anxiety, depression, bipolar disorder, schizophrenia, really severe types of mental health. So it's actually as much of an impact as having abdominal obesity or smoking. But we don't talk about it in the same way as physicians, as healthcare folks in general. And unfortunately, because we don't have a pill for that, we get nervous to ask. But to what you're saying. It's critical that we understand that has an impact not only on the ability of the body to adequately fight disease, whether it's COVID or ongoing heart issues, but it also impacts our ability to take medications on a routine basis, our ability to get outside and go for a walk or nourish ourselves with good foods.

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Navigating proper health management can be a journey all on its own, one that rivaled even the treacherous road to the proper diagnosis. However, finding empowering care and support is what truly changed the course of Gerard's life. He now has found a place and people who are there to help him take care of his mind, body, and spirit.

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We've talked about, like, maybe we want to move out of the freezing, bitter cold someday, and it's like, no, we're not going to leave the Minneapolis Heart Institute. This is where we are. We have such an amazing team, and we just feel so lucky. Not everybody has health insurance. Not everybody has the resources that they need to access that. But it's such an amazing place, and I hope that everybody that needs it can have it.

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Gerard has now started to find a relatively stable pattern in his life. He's switched from the life vest to an internal defibrillator called an ICD, making it much easier and more comfortable to move around. He's also realized how lonely this diagnostic journey felt at times. Even though he did have so much family support, he was missing the connection to people who were going through a similar journey to talk with and to share with. So Gerard is now using his story to make sure no one else with heart failure has to be missing that important piece. When did you realize that you needed to connect with a larger community? When did you realize that you needed support from other people who were going through what you now had on your plate?

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As a black person who very much believes in community, as part of our healing process, as part of our journey, as part of how we raise kids, it's not just about medications and limiting sodium and water intake and working out. It's about community. It's about joy. It's about healing with other people. And this is something that's true about my community in general, is that if there's a space that doesn't exist for us, we're going to create a space. That's what I did.

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And I don't know if Gerard explained that to you that's part of when we met was in this quest to start a support group. I've been a part of support groups since my time in fellowship, particularly because we have so many disparities with women, heart disease. And so I helped lead a support group at that time.

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It's been great. And as much as I think that maybe I've helped people, they've helped me as well. So I think that I've stepped into this whole new world of not only dei work, but advocacy, health, equity. There's. A world out there of research and things that people are understanding about the physiological impact of racism, stress, poverty on communities, and particularly black communities. And I think that society tells us that our outcomes are our fault and our fault alone. Now I'm thinking about not only how do I maintain my own health, but how do I help other folks have access to better care so that if they are at risk or experience heart failure, that they can get the level of care that I got and the level of support that I got.

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The same king of chill, eternal optimist, and constant rock of support for Courtney is now giving his energy to make sure other people don't have to wait as long to find a diagnosis or community with shared experiences. This drive pushed Gerard to start posting about his journey on Instagram.

[00:33:55]

And I remember my wife and sister just talking about how ever since I was diagnosed with heart failure, I have these really critical and direct hot takes. I think that we kind of joked around like heart failure hot takes, and was like, you know what? This is actually kind of cool. We should do something with this. And from there, I created the Instagram page heart Failure Hot Takes as a way really to share my story. And in some ways it was about community, but in a lot of ways it was just therapeutic for me to share.

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Gerard is definitely somebody that is living his life. He is thriving, he's living alongside his diagnosis. He has definitely not become his diagnosis. Also, he is out trying to make this easier for other people. I just both personally and professionally have so much respect for that.

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And the last thing that I will say is take the time to appreciate and show gratitude for yourself and for others in your life, because it's hard to do this without any of that. And the more gratitude and compassion you show yourself and to others, the easier this becomes as well.

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The hope that I have for everyone is that they know that they're allowed to advocate for themselves. I think so often we kind of get that white coat syndrome, not just with our own stress around medical providers, but just about where our agency lies. Don't be afraid to keep asking questions. Don't be afraid to ask them to note it in your chart that they are declining. Your request for a test to be run like that is within your right to want the best for yourself and the people that you love.

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You can follow Gerard's journey with heart failure on Instagram at heart Failurehotakes my.

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Name is Gerard Green, and I was 29 years old when I was diagnosed with congestive heart failure.

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On the next episode of Symptomatic chris thought he had a simple case of indigestion, but things quickly became unmanageable. Losing control of his GI flares, no intervention could seem to ease his suffering.

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I drove myself to the hospital, to the emergency room in a sheer panic because I was worried if I called the ambulance, they wouldn't get there in time or whatever. And I had never felt anything like that before. Pain radiating from everywhere.

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That's essentially what it felt like uncover.

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What sent his body into a full allergic spiral. Symptomatic Medical Mystery Podcast is a production of Ruby Studio from Iheart Media. Our show is hosted by me, Lauren Bright pacheco executive producers are Matt Romano and myself. Our EP of post production is James Foster. Our producers are Sierra Kaiser and John Irwin, and this episode was researched by Diana Davis.

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Intresto Succumbatrovalsartin Tablets is the number one heart failure brand prescribed by Cardiologists and has helped over 1 million people. It's a prescription medicine that treats adults with long lasting heart failure and works better when the heart cannot pump a normal amount of blood to the body.

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Don't take intrusto. If pregnant, it can cause harm or death to an unborn baby. Don't take Entrusto with an Ace inhibitor or Alicecaren, or if you've had angioedema with an Ace or ARB. Don't take with Alicecaren or within 36 hours of taking an Ace inhibitor. The most serious side effects are angioedema, low blood pressure, kidney problems, or high blood potassium. Angioedema is swelling of your face, lips, tongue, and throat that may cause death if it causes difficulty breathing, get emergency help.

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Ask your doctor about intresto. To learn more, visit support Entresto.com or call 833-44-6699 for pricing. Visit entresto.com.

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Cost.

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If you can't afford your medication, Novartis may be able to help.