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    The Longest Lived Open Heart Patient: Part 2 - What Came Next

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    The Longest Lived Open Heart Patient: Part 2 - What Came Next artwork
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    What happens after you survive a surgery that wasn't supposed to work? Bill Causey didn't just survive - he thrived. Law school, 34 years teaching at Georgetown, marriage, family, and a career that impacted thousands. In Part 2, Bill shares what it was like navigating decades of cardiac care, the deeply personal letter from Dr. Taussig that said "hearing from you warmed my heart," and why he's devoted years to adult congenital heart advocacy. We also dive into the critical difference between pediatric and adult congenital care - and why 80% of cardiologists aren't trained to treat adult CHD patients. This episode tackles access to care, the mental weight of living with something you can't cure, and what doctors told Bill for 73 years straight: "You're going to need a valve replacement." Spoiler: He still hasn't. Keywords: adult congenital heart disease, ACHA, pediatric to adult transition, CHD advocacy, cardiac care access, living with CHD, valve replacement, congenital heart awareness

    You talked about the surgery and the follow-up, and just how impactful it was. I mean, cardiologists years later recognized the scar. But aside from your mom telling you that you're not special in a good way, what did follow-up look like for you in the 50s and 60s? And when did the term "adult congenital heart disease" ever hit your radar, if at all? Despite my early meeting with the medical world, I had a very normal childhood. As I said, I went through public school, had lots of friends, and would do whatever all the other kids would do. I would be seen frequently by my doctors, first at Hopkins, then at Mayo, and now at Children's. To me, going to the cardiologist is like going to the dentist. It's just part of my life, and there's nothing special about it. I know I have to do it. I know it's critical that I do it. That's one of the reasons I'm involved with ACHA, to make sure that we can provide access to care for all the people who have been through what we've been through so that they can live the normal life that we've lived. I had a very normal childhood. I did fairly well in school. I knew at a very early age I wanted to be a lawyer, although I felt like I'd been through medical school already with all the procedures I had. I went to college and had a very active college life. I was the president of the student government my senior year in college and did all the normal things you would do in college. Then I went to law school. I hated law school. I thought maybe this wasn't the right choice. But it's ironic because it turns out that one of my careers in later life was teaching in law school. I was an adjunct professor at Georgetown University Law Center for 34 years while I was practicing law during the day. What kind of law did you teach? I taught just about everything. I was there so long that my favorite course was an evidence course. That was my largest course. I had about 80 students in that class. I taught a course in professional responsibility. My two favorite courses were courses that the Dean of the law school asked me to teach. One day the Dean came to me and she said, "Bill, we have a little bit of a problem." And I said, "What's that?" She says, "Well, a lot of our students are third-year students who are going on to be law clerks to federal judges. The judges are coming back to us and saying that our students don't seem to fully understand criminal procedure in federal court. Can you develop a seminar just for students who are going to be law clerks to federal judges so that they leave here knowing what criminal procedure is all about?" I said, "Sure, I can do that." So I put together a seminar and taught that for about six years. I had maybe 8 to 10 students in my class. It was a very small class, but they were probably the cream of the crop of students at Georgetown. I tried to tell them something about criminal law so that when they would go work with judges, they would do Georgetown honor by knowing what the criminal procedure was all about. The other course that the Dean asked me to teach, she said, was kind of funny. She came to me once and she said, "Bill, we've got a little bit of a problem. We have a lot of students who are getting to the end of their law career, but they're two credits short, and we can't let them graduate. Can you develop a quick seminar in the summertime so that they can quickly graduate before the end of the summer semester?" I said, "Sure, but I'll do it only under one condition." And she said, "What's that?" And I said, "Let me pick the course." She said, "Okay, that's a deal." And I picked a course, and I taught a seminar called Law and Literature. As you can see from the books, I'm a pretty big reader. I taught a course, it was a six-week course. I gave them two novels to read, a couple of short stories, a couple of plays, and then I would show the videos from the movie versions of everything I assigned, and we would talk about them. One of the books I assigned was *To Kill a Mockingbird*. And when these third-year law students got my assigned syllabus, they came to me and they said, "Are you kidding me? What do you mean *To Kill a Mockingbird*? I read that in high school, and you're going to make us read that now in law school?" And I said, "Yep." I said, "Trust me, you'll see it much differently as a lawyer than you did in high school." And they read it, and they came to me afterwards and said, "You know, you were absolutely right. We see so much more in that book as a lawyer than we did as a high school student." So I had a wonderful career at Georgetown, and it was a good compliment to what I was doing during the day, which was basically practicing law. Let me just make a quick comment about my law practice. I've had a very eclectic career. I've been through small firms, larger firms. I was in an international firm at one time. But I did a lot of litigation, and the firms that I was with represented doctors, hospitals, and medical societies. So I was right at home. I felt right at home with doctors and hospitals, and I could read a medical record, like it was a menu. I could talk to doctors, and they would understand that I knew what I was talking about. So they wouldn't be able to talk over or around me. I would get right to the point, and I would go scrub and watch surgery. So I understood how a surgical procedure occurred, so that when I dealt with it in the courtroom, I had been there. I knew firsthand what it was like. And that was all thanks to your experience as a CHD patient. Yeah, absolutely, absolutely. So I had an interesting blend of my personal life with CHD and my professional life in law with, you know, working with doctors and hospitals, and then my teaching experience at Georgetown. So I've had a very fulfilling career in the law, both in the courtroom and the classroom. And then there was my third profession, which was I've been a docent at the Air and Space Museum for 20 years. And people say, "Well, how did you get interested in space?" And when I was in elementary school in Baltimore in 1961, we all had to go into the school gymnasium and watch Alan Shepard, the first American, go into space. And I watched this and I said, "Hey, that's pretty cool. I think I want to be an astronaut." And everybody said that. So I started to read a lot more about the space program and got very, very interested in it. To make a long story short, I eventually applied to be a docent at the Air and Space Museum, got that job, and have been doing that now for 20 years. In fact, I was supposed to give a tour there yesterday, but it's shut down, of course, now because of the shutdown. Wonderful. How has your... I mean, we talked about the benefit that the experience as a CHD patient gave you in your legal career, but in any of your three careers, really, has it ever caused an issue that you didn't expect? Has that ever come up in a way that, you know, did anyone ever think that you were limited when they found out about it? An example I use is, I always played it very close to the chest, pun intended, when I was working at a large firm, not law finance, because I knew as soon as I told one person, or the wrong person, they would be treating me differently. The spots I've worked in finance, finance is fairly high intensity. Then I moved to a small firm, and as long as I told them I was fine, no one thought less of me for it. They're just thinking out loud here. Has that ever... has someone ever learning about it ever changed their approach to you? Or has it ever caused a problem? Or did you hide it? I'd love to hear more about that because this is a question I get a lot: how do you deal with the actual environment? Well, you know, thank you for that question. It's a very interesting question. And I have to say, quite honestly, that until recently, recently meaning the last couple of years, I've never talked about my CHD. I went through most of my life except with, you know, my doctors and my family who knew, of course. There was no need to mention it. I was going to be that normal kid that my mother told me to be. And I never had a reason or a cause to tell anybody that I had CHD. And I don't think anybody really knew that I did. It wasn't until about five years ago when someone mentioned to me, I can't remember whether it was at the Mayo or at Hopkins, but someone mentioned to me, "You know, Bill, you're probably one of the oldest living open heart surgery patients alive." And I said, "You know, I've never thought about that really." And they said, "Yes." And that got me to thinking, and I went and like I asked Mr. Google, you know, what the answer to that was. And I found out that there was a guy who had surgery three months before I did, living in California. His name was James Wood, and he was Guinness had him listed as the oldest, longest-living open heart surgery patient. He had his surgery in February of '52, and I had my surgery in April of '52. And Mr. Wood passed away about two years ago. And so now my cardiologist at Children's National Hospital in DC, she says, "You know, Bill, now you're the number one, you're the oldest living." And I don't know how I should react to that. I don't know whether, you know, it's a badge of honor or whether I should say, "Hey, I'm just a normal person like everybody else." But it has instilled in me a desire to get more involved in the CHD world because I feel I have something to give back now. I have a reason to give back because I've been so fortunate, you know, to live my life with this all my life. And so my cardiologist now, my adult cardiologist now, and there is a big distinction as we'll get into, my adult cardiologist now, Doctor Anita John at Children's, she trained under Carol Warnes at the Mayo. And when I was at the Mayo one time about 15 years ago, Doctor Warnes said to me, "Bill, I have something to tell you. I'm thinking about retiring pretty soon, but I have a doctor who is trained under me who understands adult cardiology, and she's now in Washington, DC, and I think you should go and make her your doctor." And I did. And so Doctor John has been my cardiologist ever since then. And it was Doctor John, who's very involved in ACHA, came to me and said, "Bill, you ought to get involved in this organization." And I did. And I, you know, I looked it up, got involved, started meeting with people, and obviously with it today. So it was really Doctor John, through Doctor Warnes, that got me, encouraged me to get involved in CHD because Doctor John understood that someone who has CHD and has gone through this, certainly as long as I have, understands what it's like and can help other people who maybe aren't getting along with it quite as easily or as well as I did. And I've learned, after being with ACHA, there are a lot of people who are struggling with this. A lot of people who are younger than I am, who are struggling with this, who've had open heart surgery once or twice or three times and are having some difficulty dealing with it. I try, when I do get to talk to these people, I try and tell them what my mother told me: "You know, you are different, but you're not better, and you're not special. Just go out and live your life. Make, live each moment, live each day, make the most of your life. We all don't know how long we're going to be here, but make the most of it and feel fortunate that you've had the opportunity now to do that and that this is not something that drags you down. It's not something that slows your life. It should be just an experience that you've been through, and it gives you a chance to go out there and do more and help other people who have a similar condition who may not be dealing with it as well as you are." So I mean, that's the basic reason that I got involved, and I'm so thankful to Doctor John that she introduced me to ACHA and that I'm involved. That's... I mean, it has to feel like a heavy responsibility, that honor of being the longest-lived, not longest living, but longest-lived open heart patient. But it's amazing the different paths to advocacy, and if I can say so respectfully, the late start you found to advocacy in your life. You would have been what, retired and almost 70 by the time you started speaking to other patients. Yeah, yeah, yeah. Well, I retired largely. I mean, when I retired, I really didn't feel like I had to, except I was writing a book, and it was about the space program, believe it or not. And I had done the research on it for many, many years. And finally my wife said, "Hey, look, you really got to get that book done. Why don't you just retire and stay home and write the book?" And I did, and got the book done, and it got published and it's out there. But yeah, I've always felt that you don't stop. You keep, it's like walking. You keep one step in front of the other. You keep on going. You find new adventures, you find new places, you meet new people. Just keep going. And I just feel so fortunate that I've had the opportunity ever since that day in April, 73 years ago, the opportunity to do that. So I'm going to take advantage of it, and I'm not going to let it slip away. And I did like what you were saying about how you speak to these other patients about, you know, "You're not, you're special, but you're not special, and you're not better." Right. Because I wish someone had said that to me. I mean, God, just being fully transparent here, as I, I tried to be vulnerable, I've always had a chip on my shoulder from this. I've always had something to prove. I always had to be top of the, well, near the top of the class. Had to be, you know, my friends got part-time jobs in high school, I got a full-time job. My friends worked out three times a week, I had to work out six or seven. I had to be good in undergrad, had to be good in graduate school. And it's even progressed. I mean, I've grown a lot, but that kind of attitude of “I have to keep going, keep pushing, keep doing everything” because I did not know what my life expectancy would be. I'd never talked to patients that had gone through it 40 years before me. I did not know what was going to happen. I didn't know the CHD community existed until I was 21, 22. So if someone had said that to me early on, I wonder what would have been different. Because I feel, even though I've grown and matured, that there's still an echo of that throughout a lot of what I do is I need to always be doing something. I cannot waste time. And if we had stories like yours 30 years ago, and in formats where people could listen to, like, I don't know, maybe a podcast, I wonder how helpful it would have been. We'll see, I guess, but it brings everything full circle in a lot of ways here. Yeah, yeah. Well, it's, you know, the other thing that you learn as you get older is that there are lots of other people, and you start to realize this when you're a kid too, lots of other people that have their own problems. Maybe it's not CHD, but it's something else. It could be another disease or, you know, another deformity or, maybe a mental health issue. But there are other people out there struggling in many ways as much as we think we are. We're fortunate because we have medical science that kind of helps us along. But as I said, you know, as my mother said very early to me, "You are, you're different, but you're not special. You're different, but you're not, you know, unique. All the people are going through this too. Just lead your life as normally as you possibly can." And that, you know, that has stuck with me for the last 73 years, and it's been my guiding principle. So I know, I don't slow down. It's not that I push myself beyond what I think I need to be doing. I just am interested in a lot of things. There are a lot of things to do. You know, the world's a very interesting place. And I just, just wake up each day fortunate to be able to experience a new day. Beautifully said. "You are different, but you're not special." Good piece of advice. And that was Part 2. In the final episode, we'll talk about legacy and why CHD awareness matters so much. Thank you. I'll see you soon.

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