[COLD OPEN]

Drezden: Welcome back. This is part two with Bill Causey. Last time we covered the surgery. Today we're talking about what came after.

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[CONVERSATION]

Drezden: You talked about the surgery and the follow-up and just how impactful, 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" ever hit your radar, if at all?

Bill: Well, despite my early meeting with the medical world, I had a very normal childhood. I went through public school, had lots of friends, did whatever all the other kids would do. I would be seen frequently by my doctors, first at Hopkins and then at the 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. And that's one of the reasons I'm involved with ACHA, to make sure that we can provide access to care for all of the people that have been through what we've been through so that they can live the normal life that we've lived.

But 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 had been through medical school already with all the procedures. I went to college, had a very active college life. I was president of the student government my senior year in college and did all the normal things. And 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.

Drezden: What kind of law did you teach?

Bill: I taught just about everything. I was there so long. My favorite course was in evidence, that was my largest course, about 80 students. I taught professional responsibility. My two favorite courses were ones the dean of the law school asked me to teach. One day the dean came to me and said, "Bill, we have a little bit of a problem. A lot of our third-year students are going on to be law clerks to federal judges. The judges are coming back and saying 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?" I said, "Sure, I can do that." I put together a seminar, taught that for about six years. Maybe 8 to 10 students, probably the cream of the crop at Georgetown.

The other course, the dean came to me once and 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?" And I said, "Sure, but I'll do it only under one condition." She said, "What's that?" I said, "Let me pick the course." She said, "Okay, it's a deal." And I picked a course and taught a seminar called Law and Literature. I'm a pretty big reader. It was a six-week course. I gave them two novels, a couple short stories, a couple plays, and then I would show the videos from the movie versions of everything 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 syllabus, they came to me and said, "Are you kidding me? I read that in high school and you're going to make us read that now in law school?" And I said, "Yep. Trust me, you'll see it much differently as a lawyer than you did in high school." And they read it and 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 complement to what I was doing during the day, which was basically practicing law. Let me make a quick comment about my law practice. I've had a very eclectic career, small firms, larger firms, an international firm at one time. I did a lot of litigation and the firms I was with represented doctors, hospitals, medical societies. So I was right at home. 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, they wouldn't be able to talk over or around me. 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.

Drezden: And that was all thanks to your experience as a CHD patient.

Bill: Absolutely. So I had an interesting blend of my personal life with CHD and my professional life in law with working with doctors and hospitals, and then my teaching experience at Georgetown. I've had a very fulfilling career in the law, both in the courtroom and the classroom. And then there was my third profession, I've been a docent at the Air and Space Museum for 20 years. People say, "How did you get interested in space?" 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 said, "Hey, that's pretty cool. I think I want to be an astronaut." So I started to read a lot more about the space program and eventually applied to be a docent at the Air and Space Museum, got that job, and been doing it for 20 years.

Drezden: How has your experience as a CHD patient affected your careers? Has it ever caused an issue? Has anyone ever thought you were limited when they found out about it? I always played it very close to the chest, pun intended, when I was working at a large firm, because I knew as soon as I told one person or the wrong person, they'd be treating me differently. Finance is fairly high-intensity. And 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. Has someone learning about it ever changed their approach to you? Did you hide it?

Bill: Thank you for that question. I have to say quite honestly that until recently, meaning the last couple years, I've never talked about my CHD really. I went through most of my life, except with my doctors and my family who knew, there was no need to mention it. I was going to be that normal kid that my mother told me to be. I never had a reason or a cause to tell anybody. And I don't think anybody really knew.

It wasn't until about 5 years ago when someone mentioned to me, I can't remember whether it was at the Mayo or at Hopkins, "Bill, you're probably one of the oldest living open heart surgery patients alive." And I said, I'd never thought about that. Really? They said yes. And that got me thinking, and I went and asked Mr. Google. I found out there was a guy who had surgery 3 months before I did, living in California, his name was James Wood. Guinness had him listed as the longest-living open heart surgery patient. He had his surgery in February of '52. I had mine in April of '52. And Mr. Wood passed away about two years ago. So now my cardiologist at Children's National Hospital in DC, she says, "You know, Bill, now you're the number one."

I don't know how I should react to that. Whether it's a badge of honor or whether I should say 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. My adult cardiologist Dr. Antha John at Children's, she trained under Carol Warnes at the Mayo. About 15 years ago, Dr. Warnes said to me, "Bill, I'm thinking about retiring pretty soon, but I have a doctor who trained under me who understands adult cardiology and she's now in Washington, DC. I think you should go and make her your doctor." And I did. And it was Dr. John who's very involved in ACHA who came to me and said, "Bill, you ought to get involved in this organization." And I did. So it was really Dr. John through Dr. Warnes that got me encouraged to get involved in CHD.

I try, when I do get to talk to people, to tell them what my mother told me: you are different, but you're not better and you're not special. Go out and live your life. Make the most of it. This is not something that drags you down. It should be an experience that gives you a chance to go out there and help other people who have a similar condition who may not be dealing with it as well as you are.

Drezden: It has to feel like a heavy responsibility, that honor of being the longest-lived open heart patient. But the different paths to advocacy, if I can say so respectfully, the late start you found to advocacy. You would have been almost 70 by the time you started speaking to other patients.

Bill: Yeah. Well, I retired largely because I was writing a book about the space program and my wife said, "You've got to get that book done, just retire and stay home and write the book." And I did. But I've always felt that you don't stop. You keep one step in front of the other. You find new adventures, new places, new people. I feel so fortunate that I've had the opportunity ever since that day in April, 73 years ago.

Drezden: And I liked what you were saying about how you speak to these other patients, "you're special, but you're not special and you're not better." Because I wish someone had said that to me. Being fully transparent here, I've always had a chip on my shoulder from this. Always had something to prove. Had to be top of the class. 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. Going into undergrad, graduate school, I didn't know what my life expectancy would be. I had never talked to patients who had gone through it 40 years before me. I didn't 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. If we had stories like yours 30 years ago, in formats where people could listen, maybe like a podcast, I wonder how helpful it would have been.

Bill: Well, the other thing you learn as you get older is that there are lots of other people that have their own problems. Maybe it's not CHD, but it's something else, another disease, another deformity, a mental health issue. Other people are out there struggling in many ways as much as we think we are. We're fortunate because we have medical science that helps us along. But as my mother said very early: you are different, but you're not special. You're not unique. Other people are going through this too. Just lead your life as normally as you possibly can. That's stuck with me for the last 73 years and been my guiding principle. I just wake up each day fortunate to be able to experience a new day.

Drezden: Beautifully said. "You are different, but you're not special." Good piece of advice.

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[OUTRO]

Drezden: And that was part two. In the final episode, we'll talk about legacy and why CHD awareness matters so much. Thank you and I'll see you soon.