This is Part 3, the final episode of this mini-series. Something you mentioned there is that a lot of people are struggling as much as we think we do. I think that's something that goes throughout the community. A lot of the time with congenital heart defects, you're either fine or you're not. When things come up, they're major and need to be addressed, but they're addressed surgically and the rest is follow-up. Something I say to people that tell me they don't feel like they should talk about it because they are not struggling now, or they are not struggling as much as others with mental health conditions or drug dependency issues, for example, is that there is a lot of pain, a lot of struggle, and a lot of pressure. It’s binary. It's a switch—either you're struggling or you're not. So, especially for these patients, when they say to me, "This is very difficult, but it's harder for people that have a visible disability," I like to bring it back to this: a struggle is a struggle. Your brain is going to react to it, whether it's the worst thing in the world or just slightly bad. Your cognitive perception of it will change significantly, and the way it hits you will change significantly, but the emotional aspect to it is going to be more or less a light switch. Now, I don't know if that's true 100% of the time, but I feel like it gives these patients a much better way to feel about themselves when they do hit that struggle. They could be 20 years out from surgeries and probably won't need one for another 20 years, and they still don't feel entitled to the kind of support that the ACHA, the Adult Congenital Heart Association, and other organizations offer. And that's why I like to tell them, "Just because you don't need everything right now doesn't mean you don't need something, some support, someone to talk to." Well, I've been told forever, since I had my surgery 73 (seventy-three) years ago, by just about every doctor I've seen, "Bill, at some point you're probably going to need a valve replacement." Well, that was 73 (seventy-three) years ago. It’s kind of getting old with me now. Everybody tells me that, and I say, "Really?" I'm almost 77 (seventy-seven) years old, and I haven't had a valve replacement. That's not to say I won't need one next year, of course. But if I do, you face it and you do it. I've never, even though everybody who has CHD and has had open heart surgery feels there's something hanging over their head in the future that is going to be difficult to overcome, whether it's a valve replacement or another surgery or something. You can't let it bother you. You really can't. Every time I see a doctor, they say, "You're going to need a valve replacement." I just don't let that bother me. If I do, I do. I don't sit and dwell about it. I don't worry about it. I've been there, I've got that, and I just keep moving. But I understand that people react to all this. One of the things I've learned through ACHA is people react to all this very differently. And it's the people who do need help getting through this that we want to reach, not only in terms of mental health issues or dealing with family issues. But, of course, there's the other side of the coin, which is just access to care. I've been fortunate to have had the resources all my life to have access to care, and it's probably kept me alive to get to 77 (seventy-seven). A lot of people don't have that ability or the availability to have access to care all the time. And that's one of the main things we're trying to do at ACHA is to spread access, and access not just to cardiac care, but to adult cardiac care. This is a whole different podcast. We can talk about what's the difference between the two, and there's a huge difference, as you know. But that's one of our missions at ACHA, to make sure that people like us have access to care to keep us going. And that's one of the reasons I'm involved. Yeah, well said. Now, we won't break into the nitty-gritty of the difference in care, but at a high level, how would you say pediatric and adult care is different? Then I'm going to compare it to my experience. How would I say that adult care is different? Adult and general care. Well, there are many answers to that. One is, of course, physiology. As we grow older, our heart and our heart structure and our system changes. In some ways, it becomes much more complex than the pediatric heart. And that's why we've learned in the last 10 (ten) years that we need cardiologists who are specially trained to deal with adult cardiac issues. I think it's like eight or nine out of 10 (ten) cardiologists in the country only know pediatric cardiology. Why are the reasons there's that sharp transition between the teen years and early adult years? It's that when you get to your teen years and you're becoming an adult, pediatric cardiologists don't want to deal with you anymore because they don't know how to deal with you anymore. They're not trained to deal with the adult heart, and you kind of feel like you're pushed aside. It's our job, our meaning ACHA, to help those people find cardiologists who specialize in adult care so they can continue to have the care that they need as they get older. And that's one of our major missions at ACHA. We're one of the few health organizations that exist where there's no cure for what we have. We've had it since we were born. It's in the name of our organization, congenital. Many other organizations, whether it's cancer, ALS, or MS, whatever those are, are acquired, if I can use that word, "acquired" diseases and conditions. We don't have that. We've had it all our lives, and there's no cure for it. We just have to adapt to it and do the best we can with it. So that's what makes our organization a little different than everybody else. When I go and I talk to people who want to know what ACHA does and why we're different from the American Heart Association or ALS or the Cancer Association, I say, "We're one of the few organizations where we don't have a cure. Our problem is access. Our problem is developing with something we've all had all our lives." And that's not as easy as you think if you haven't had that problem. So, yeah, that's why I think ACHA is such a critical organization and why we've got to do everything we can to support it. I'm right there with you. I'm happy you used the word "acquired," because not only is there a difference between pediatric congenital heart care and adult congenital heart care, but a lot of people also see it as acquired cardiology care. It's important to differentiate between congenital cardiology, which is for the malformations in the structure of the heart present at birth, such as pulmonary valve stenosis and what have you, versus acquired heart disease, which is an entirely different ball game. It's changes to the heart from a normal baseline as you age, be it from age itself, be it from diet or lack thereof, or just other age-related changes. What amazes me is I had pediatric cardiologists all through my life until I was 16 (sixteen) and had my last surgery. After that last surgery, the doctor—I mean, I probably had 12 (twelve) cardiologists before the age of 18 (eighteen). I said that once on the panel, and I had a room full of unhappy doctors. Afterwards, I switched to an adult cardiologist. I didn't know anything about adult congenital. I was going to acquire heart disease specialists. Then I came to Graduate School the first time at Vanderbilt, and it was right there in November 2020 (two thousand twenty), where, no matter what I did, I got COVID. Afterwards, my Vanderbilt school doctor said, "Hey, I want to get your heart checked just because we don't know how COVID affects it." So she sends me to a cardiologist, and the cardiologist says, "Why are you here? We have an entire adult congenital heart division." And I said, "What's that mean?" And boy, did that put me down the path. The difference, I mean, being able to speak to a cardiologist who not only understands the adult aspect but was able to bring me into the loop and at least, you know, I didn't know what I didn't know. Just one conversation with him, I could at least know what to Google and go read. I got—Chat GPT would not have been released yet, but I can go ask six different large language models, "Hey, what does this mean? How do I understand it? Explain it to me as someone with limited medical knowledge." And the narrative completely shifts. But none of my adult acquired heart disease doctors were able to mention that to me. None of them mentioned that I should be going to a congenital heart doctor, and none of them explained the difference. Right. Until I got out here. That happened what, 22 (twenty-two) 23 (twenty-three)? Right. Well, that's why it's so important that we have these clinics that we accredit around the country. I think we have 57 (fifty-seven), 56 (fifty-six), yeah. We have all these clinics. One of our best is at Vanderbilt, and we have one at Johns Hopkins, Stanford. We have them all over the country. But fortunately, these clinics are now being able to offer adult care to people who have grown up with a congenital heart problem. And now we no longer should, no longer be seen by a pediatric cardiologist. They should be seen by an adult congenital cardiologist. Fortunately, that universe is expanding, and in that respect, we're meeting our mission in that we're providing access to care, and hopefully, we'll continue to do that. When did the term "adult congenital heart care," adult congenital cardiology, enter your world? Did you go to a pediatric cardiologist for most of your life, or was there a program for you in place? Well, I went, no, I had a clear transition. My transition was when I was about 20 (twenty) when I started going to the Mayo. Doctor Warrens at the Mayo was an adult cardiologist, and she was special. I don't think she specialized, but she was aware of congenital adult cardiology. She was one of the trailblazers of adult congenital cardiology, Dr. Warrens. And I think that's when I first became aware that there was a difference between a cardiologist seeing you as an adult and a cardiologist who was seeing you as a child. I don't think I connected in my mind the phrase "adult congenital cardiology" exactly at that time. It wasn't really until Dr. Warren said to me, "At some point, you ought to see an adult congenital cardiologist, and I have one in Washington you should see because I trained her." And that's when I really became aware of the difference. And it was Doctor John, as I said, that brought to my attention ACHA and said you really should get involved in this organization, which I did. So your first adult cardiologist, I mean, your care in that field, really progressed as the field itself progressed. Yes, let's be frank here. Before your generation, adult congenital heart patients just weren't making it to adulthood or admissions were going undiagnosed. And they. I was probably a little bit ahead of the curve on that. I think when I first started going to the Mayo, adult congenital cardiology care was first coming into existence. And that's why I was very fortunate to be able to go to the Mayo because I think I got very good care early on in what I needed as I transitioned from my teen years to my adult years. But yeah. And one of the big issues we face in dealing with this whole question we're talking about is, number one, convincing people with cardiac issues that as an adult, they need special care. And secondly, providing them access to it. Because there are a lot of people around the country who have a congenital heart condition, and they don't know that there's a specialty for you as you become an adult. They think they can just go see their pediatric cardiologist, and they'll take care of them. Well, that doesn't work. And if you're told that, you shouldn't be told that because it doesn't work. So, we have a big mission and an important one. I think the latest number I saw was about 5 (five) or 6 (six) million people in the United States with a congenital heart condition. That's a big constituency. And growing rapidly, as one in 100 (one hundred) babies born today will have it. As care has progressed, we're diagnosing it earlier. We're fixing it earlier, or fixing the killers earlier. And this universe is only going to keep growing. But what really gets me is it is the most common birth defect, but because of all the different defects out there and sets of defects, a lot of people don't realize that there's an awareness issue. There's a major awareness issue for the condition overall. Quick sidebar, even people who know don't. When I organize the ACHA's national walk, the annual fundraising event, I took it to my current MBA cohort at Vanderbilt, and I had two gentlemen. In the 50-person (fifty-person) class, two guys came up to me and said, "Hey, I had this issue or had that issue when I was a kid, or I had open heart when I was a kid. Is that like a congenital heart defect?" I said, "Well, that is one. Have you followed up with a cardiologist?" Okay, so you remember when I said 75% (seventy-five percent) of patients are lost to care, and that's who we're trying to reach. That's you. And what really, I mean, I've been dying to tell this story. About two weeks ago, I was talking to a mentor of mine who has helped me. He helped me prepare for my ACHA board interviews. He helped me market the walk. He has helped me with everything in my professional and personal career, and a lot of that is ACHA. He's also donated a ton of money as he's helped me. And he was talking. It's like, "Yeah, and when I was a kid, I had this, actually I'd go to a cardiologist for a while because my mitral valve didn't grow quick enough, and there was considerable regurgitation, but I grew out of it." And it's a bubble. And I'm paraphrasing here because I was sitting there at GAS because this guy who knew everything about congenital heart charities and everything that I've gone through didn't even realize he had a CHD. So as we're sitting there, and fighting, and he didn't- when I said that to him, he kind of looked at me, it was a pretty big, like, oh shit moment for the both of us. But it proved, it proved the point of fighting for the ACHA, with the ACHA, to get patients access to adult care is a fight that is bigger than that because we're fighting for awareness of the congenital heart world, in a lot of ways. So, and this isn't real, this is going to be just an open-ended question. This is going to be like what, what do we do, Bill? How do, how do we address this? Well, it's a question I think about every day. I don't know. It is a tall mountain to climb. I think we—I know I talk about the issue a lot more with people who don't even have a heart condition. Every time I get an opportunity to talk to a group or talk to people, or I'm at a dinner with friends, I somehow try and get this issue on the table because maybe it's to the point where, "Oh God, because he's coming to dinner, we gotta think about something else to talk about." But yeah, awareness is the key. You're right, awareness is the keyword. I think what I've been thinking—you asked me the question, "How do we deal with it?" Let me give you my answer. I think if everybody who had CHD, like you and me and others, were to make a list of our 10 (ten) closest friends and say, "Look, you may or may not know about my story, but let me tell you my story and why it's important. And I would like you to help me. I would like you to help me get the awareness out." If you, my 10 (ten) closest friends, would somehow bring us to the attention of your 10 (ten) closest friends, tell them to go to the ACHA website, take a look, see what we're about, I would think that would help spread the awareness. I mean, that's basically what I try and do is get my friends to think about it and talk about it. Fortunately, when we have our walk here in the Washington area every year, I get my friends here in the DC area to get involved, not only to just donate, but to actually come to the walk and meet some of us who've experienced our CHD, have us talk about it, what the experience has been like, why it's so important, and why we need the assistance and the help and the money to get that awareness out. You're right. The key, the key thing here is awareness. We're going to be able to find the places to have clinics. We're going to be able to do the research grants. But the thing that keeps our organization going and healthy is awareness. We've got to make people aware that we're not just people with a heart problem or condition. We're people with a congenital heart problem. It's been with us all our life, and since one out of every 100 (one hundred) people born in the United States have this problem, any one of your friends or relatives can have it next week and not know that they're the one in 100 (one hundred) that have it. So this is important to get out there and talk about it and help us get the word out. So, you asked a very difficult question, "What do we do about it?" And I can only think about what I think I can do about it, and that's what I've been trying to do. But the very definition of grassroots is just making- it's starting with who you know and having them tell who they know, right? Right. Or if you can make a podcast and, you know, make people tell their stories because you're tired of telling yours. Yeah, right. Well, yeah, I think if people watch this, they can see through you and me that although we have a congenital heart condition, we've able to live our lives with it. Do important things, affect other people's lives, help other people who need to find a pathway like we have to deal with their situation. And if we can accomplish all that, we're doing important things. So I thank you for doing this podcast and certainly thank you for inviting me to participate. I think we are doing important things. I'd really like to think so, and I thank you for the kind words. I know that we're coming up on time, but there's a few things I want to ask you before I get to my big closing question. You touched on this previously in a way and how the title of longest lived open heart patient took you to advocacy. But taking that a step further, and this is going to touch on the million cool things you've done in your life that we didn't even talk about like helping with legislation post-Watergate and all your other very impressive. We talked about publishing the book, but just everything else you've done. When you think about legacy now, and you think about professionally and personally, and on the cardiac side with that title of longest lived open heart patient, where do you see your legacy? Where do you see your fingerprints on other people's lives? I mean, as somebody who's had a finger in your heart, what other hearts have you put your fingerprints on? Wow, that's a big question. I guess the answer is I just hope that I've been able to make a difference in people's lives in many different ways. And it starts, of course, with CHD and what we do with ACHA. And I hope that what I can say and tell people who have CHD will help them get through their situation, their individual situation with CHD. But I think I've, you know, you ask about legacy. Legacy isn't just one avenue. I'd like to think that all the students I've had in school, at law school, at some point they'll say, "Oh, I remember that professor, you know, 20 (twenty) years ago. He was really pretty good. I learned a lot from him." I've had students come up to me who had me 20 (twenty) years ago to say that. I like to think that the people I give tours to at the Air and Space Museum say, "Hey, that was really a great tour. I learned a lot, and thank you for doing that." So, I mean, we can have our legacy in many different buckets. And it's not only the CHD bucket, but there is just in any way impacting the lives of others. Just give you a very short, quick story of what I'm talking about. Just this morning, my great-nephew contacted me. He's applying to colleges, and he sent me his resume. He said, he said, "Uncle Billy, I'd like to have you take a look at this. I want you to review it before I send it out because I think I appreciate and respect your opinion." What more can you ask about for legacy and something like that? So I scribbled up his resume and put lots of marks on it and sent it back to him and had a quick conversation with him earlier. So I think that's a life I affected today. And that's that's what your legacy should be all about. That's probably a too simple an answer to a very important question, but. It's not a simple answer, but you made it simple to understand because I'm with you. I really am. I mean, I say for this podcast, doing this, the social media, the website, the publishing, the post-production, as somebody who has not a single creative bone in their body, it's a lot of work. But I always say, "If it can help one person just a little bit, it's worth it." Picking up one patient, if it can broaden the universe a little bit, if it gives one person one good resource, it's all worth it. And I think you're taking that a step further where legacy isn't about some grand, it's not about some big arc you build to yourself and all you've accomplished. It's not about the fact that some people know your name. What legacy is, is the little nudges you make throughout your life that make it better for everyone else. It's holding the door open for someone is just as important as giving away your entire net worth to an organization. In a lot of ways, it's binary, but if you can help, you need help. And that's what it comes back to. And, you know, you know, you have a good step up or legacy when you have a student you had 20 (twenty) years ago say to you, "You know, I really remember your class, and I think I learned a lot in your class." That's what you want to hear. And it's, and it's probably the kind of effect that you don't even think about at the time. It's just from what you're already doing and tying it all together. And I'm going to be, I'm thinking about how to say this as I say it, so I might speak over myself, but I think this all ties back to the legacy. It all ties back to the legacy of Blalock-Taussig, where if they haven't done what they've done, all that. I mean, another reason why I just love to talk to you is because of everything you've accomplished and the lives you've affected because of what they've accomplished. And the best part is there's a lot of CHD patients like you that are just at different spots in their life still making that influence. And none of it would have been possible without these doctors and caregivers and researchers that did all this work long before I was even born. And it ties back to the awareness issue where people don't even know they have congenital heart defects. So there's this universe out there of patients that are surviving and thriving who aren't aware or not involved in the community, making these dramatic differences as they live normal lives. And that's the takeaway I want everyone to get from this episode or series of episodes with you. No, when you talk about legacy, I come back to the letter I got from Doctor Tausik when she said when she got my letter and she said, "Hearing from you warmed my heart." You know that that means a lot to me. And you're right, the Tausik and Blaylock, and Thomas collectively and in their individual ways had such an influence on the medical world in general and the cardiology world in particular. And I feel very fortunate that that they all crossed their paths at one moment in their lives. And I was there with them when it happened. So if you want to talk about legacy, you know, I think about those things a lot. The legacy of CHD care and the legacy of CHD patients and the little nudges on a million different people making a million different nudges on the million different lives. And that's why awareness is so important. Absolutely. Because it's, it's already happens. All this is already happening in the background. It's just making sure people are aware of it so that the patients that need care know where to find the ACHA and that the ACHA can keep trucking. It has been an absolute pleasure talking to you, and I enjoyed it very much, everything I've wanted and more. But before I let you go, you know, I asked you, I mean, we've already really discussed what CHD means to you. And the typical question is, given everything we've discussed and everything you've done, what does CHD mean to you? We touched on it with legacy a bit, but I want to give you a chance to answer that and to mention anything else you want to before we end, including plugging your book again and plugging the ACHA. But you've lived a hell of a life. You've seen a lot, but you've also seen a lot of doctors, of cardiologists, as they grew, and you've seen, you know, you're talking to patients like me now and patients that are younger and going through something completely different at the highest or lowest level. What does CHD mean to you now? Well, you know, it's been a part of my life since I can remember. My very first memory is the day I was introduced to CHD. I think I just feel fortunate that I've had the life I've had with CHD, and that I feel very fulfilled by it in many ways. I just want to be able to help impart that to others so that they can have the fulfilling life that I feel I've had. Going back to what my mother said, "You're different, but you're not special. You're not unique, you're not different." I just want people who have CHD to get the most out of life, make sure they take care of themselves, they see the right doctors, they go to the right places, they keep involved with the community. And I think life will be fulfilling for people if they do that. I just hope that that happens. I know that's probably not a very good answer, but it's a difficult question. It really is the perfect answer because all you want, I think, my generation or the generation after calls it "living their best life." All you want is for CHD patients to have access to the right care and the right resources and the right help when they need it to live their best life. And that is what the ACHA does. The Heart Association does so many different ways, amongst other organizations like the Cardiac Neurodevelopmental Outcomes Collaborative and the handful of charities for pediatric and adult patients. Exactly. Well, sorry, better said than I said it. I'm just- I'm just summing up what you said, Bill. It has been an absolute pleasure talking to you. I'm going to do our close now, and I just want to say thank you. Well, I want to thank you for giving me the opportunity to talk with you and to share these thoughts with people. I hope it helps. It helps people as we take that next step as I talked about. And that was William "Bill" Causey, the longest-lived open heart patient who has direct experience with the Blalock-Taussig-Thomas procedure. We hope you've enjoyed this episode, and as always, thank you for your time. And I'll talk to you soon. Thank you. And that was Part 3, the final episode of this mini-series. Thank you all for listening to all three parts. If this resonated with you, share it with someone who needs to hear it. I'm Drezden, and I will talk to you all soon. Thank you.