[COLD OPEN]

Drezden: This is part three, the final episode of this miniseries with Bill. We've covered the past. Now we're going to talk about the future and what this all means.

---

[CONVERSATION]

Drezden: Something you mentioned about how there's a lot of people struggling as much as we think we do. And I think that's something that echoes throughout the community, where 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 surgically, and the rest is follow-up. And something I say to people who tell me they don't feel like they should talk about it because they're not struggling now or not struggling as much as others, someone maybe with a mental health condition or drug dependency. A lot of pain, a lot of struggle, a lot of pressure, a lot of it is binary. It's a switch. Either you're struggling or you're not. A struggle is a struggle and your brain's going to react to it. The emotional aspect is going to be more or less a light switch. I feel like it gives these patients a better way to feel about themselves when they do hit that struggle. They could be 20 years out from surgeries and not feel entitled to the support that the ACHA and other organizations offer. And that's when 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.

Bill: Well, I've been told ever since I had my surgery 73 years ago, just about every doctor I've seen says, "Bill, at some point, you're probably going to need a valve replacement." Well, that was 73 years ago. It's kind of getting old with me now. I say, "Really? I'm almost 77 years old and I haven't had a valve replacement." That's not to say I won't need one next year. And if I do, you face it and you do it. But everybody who has CHD and has had open heart surgery feels there's something hanging over their head in the future. You can't let it bother you. 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've been there. I've done that. You just keep moving.

But I understand that people react to all this very differently. One of the things I've learned through ACHA is it's the people who do need help getting through this that we want to reach, not only in terms of mental health or family issues, but of course there's the other side of the coin which is access alone 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 to get to 77. A lot of people don't have that ability or availability. And that's one of the main things we're trying to do at ACHA, spread access, and not just to cardiac care but to adult cardiac care. And there's a huge difference.

Drezden: At a high level, how would you say pediatric and adult congenital care is different?

Bill: Well, there are many answers to that. One is physiology. As we grow older, our heart and heart structure and system changes and in some ways becomes much more complex than the pediatric heart. And that's why we've learned in the last 10 years that we need cardiologists who are specially trained to deal with adult cardiac issues. I think it's like 8 or 9 out of 10 cardiologists in the country only know pediatric cardiology. And one of the reasons that there's that sharp transition between the teen years and early adult years is that when you get to your teen years, 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. You kind of feel like you're pushed aside. And it's our job to help those people find the cardiologists who specialize in adult care so they can continue to have the care they need as they get older.

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. A lot of other organizations, whether it's cancer or ALS or MS, those are all acquired conditions. 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. That's what makes our organization a little different than everybody else.

Drezden: I'm right there with you. I'm happy you used the word "acquired" because there's not only a difference between pediatric and adult congenital care, but what a lot of people see is acquired cardiology care. It's important to differentiate between congenital cardiology, for the malformations of the structure of the heart present at birth, things like pulmonary valve stenosis, versus acquired heart disease, which is changes to the heart from a normal baseline as you age. I had pediatric cardiologists all through my life until I was 16 and had that last surgery. After that, I probably had 12 cardiologists before the age of 18. I switched to an adult cardiologist, I didn't know anything about adult congenital. I was going to an acquired heart disease specialist. And then I come to graduate school at Vanderbilt and in November 2020, no matter what I did I got COVID. Afterwards, my Vanderbilt school doctor said, "I want to get your heart checked just because we don't know how COVID affects it." 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?" Boy, did that put me down a path. The difference, being able to speak to a cardiologist who not only understands the adult aspect but was able to bring me into the loop, I didn't know what I didn't know. Just one conversation with him, I could at least know what to Google. But none of my adult acquired heart disease doctors were able to mention that to me. None of them mentioned I should be going to a congenital heart doctor. None explained the difference until I was 22, 23.

Bill: Well, that's why it's so important that we have these clinics that we accredit around the country. I think we have 57 or so. We have all these clinics, one of our best is at Vanderbilt. We have them at Mayo, Hopkins, Stanford, UCLA, all over the country. Fortunately, these clinics now are able to offer adult care to people who have grown up with a congenital heart problem and should no longer be seen by a pediatric cardiologist. That universe is expanding and in that respect we're meeting our mission, providing access to care.

Drezden: When did the term "adult congenital heart care" enter your world? Did you go to a pediatric cardiologist most of your life, or was there a program in place?

Bill: I had a clear transition. When I was about 20 and started going to the Mayo, Dr. Warnes was an adult cardiologist. She's one of the trailblazers of adult congenital cardiology. That's when I first became aware there was a difference between a cardiologist seeing you as an adult and one seeing you as a child. It wasn't really until Dr. Warnes said to me at some point, "You ought to see an adult congenital cardiologist, I have one in Washington you should see because I trained her." That's when I really became aware.

Drezden: So your care in that field progressed as the field itself progressed. Let's be frank, before your generation, adult congenital heart patients just weren't making it to adulthood, or conditions were going undiagnosed.

Bill: Exactly. I was probably a little bit ahead of the curve. When I first started going to the Mayo, adult congenital cardiology care was first coming into existence. I was very fortunate to get very good care early on in what I needed as I transitioned from my teen years to my adult years. But one of the big issues we face is number one, convincing people with cardiac issues that as an adult they need to have special care, and secondly, providing them access to it. There are a lot of people around the country who have a congenital heart condition and don't know that there's a specialty for them as an adult. We have the latest number of about five or six million people in the United States with a congenital heart condition. One in 100 babies born today will have it, and as care has progressed, we're diagnosing it earlier, fixing it earlier.

Drezden: What really gets me is it is the most common birth defect, but there's a major awareness issue. Quick sidebar, I organized the ACHA's Nashville Walk, the annual fundraising event. I took it to my MBA cohort at Vanderbilt and I had two gentlemen in the 50-person class come up to me and say, "Hey, I had this issue 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?" So you remember when I said 75% of patients are lost to care and that's who we're trying to reach? That's you.

And what really, I've been dying to tell this story. About two weeks ago, I was talking to a mentor of mine who has helped me with everything, ACHA board interviews, marketing the Walk, my professional career. He's donated a ton of money. And he's talking and he says, "Yeah, and when I was a kid, I had to 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 I'm sitting there aghast because this guy who knew everything about congenital heart charities and everything I've gone through didn't even realize he had a CHD. It was a pretty big "oh shit" moment for both of us.

Bill: Well, that's a question I think about every day, what do we do? It is a tall mountain to climb. 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 I'm at dinner with friends, I somehow try and get this issue on the table, maybe to the point where "oh god, Bill's coming to dinner, we've got to think of something else to talk about."

Let me give you my answer on how we deal with it. I think if everybody who had CHD, like you and me, were to make a list of our 10 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. I would like you to help me. If you, my 10 closest friends, would somehow bring us to the attention of your 10 closest friends, tell them to go to the ACHA website, take a look, see what we're about, I think that would help spread the awareness."

The key thing here is awareness. We're going to be able to find places for 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. We're people with a congenital heart problem. It's been with us all our life. And since one out of every 100 people born in the United States have this, any one of your friends or relatives can have it next week and not know they're the one in 100.

Drezden: The very definition of grassroots, starting with who you know and having them tell who they know. Or you can make a podcast and make people tell their stories because you're tired of telling your own.

Bill: Well, I think if people watch this, they can see through you and me that although we have a congenital heart condition, we've been able to live our lives with it, do important things, affect other people's lives, help people find a pathway to deal with their situation. If we can accomplish all that, we're doing important things. Thank you for doing this podcast and certainly for inviting me to participate.

Drezden: Before I let you go, you've lived a hell of a life. When you think about legacy, professionally, personally, and on the cardiac side with that title of longest-lived open heart patient, where do you see your fingerprints on other people's lives? As someone who's had a finger in your heart, what other hearts have you put your fingerprints on?

Bill: Wow. I guess the answer is I just hope I've been able to make a difference in people's lives in many different ways. And it starts with CHD and what we do with ACHA. But legacy isn't just one avenue. I'd like to think that all the students I've had at law school, that at some point they'll say, "I remember that professor 20 years ago. He was really pretty good." I've had students come up to me who had me 20 years ago to say that. I'd like to think that people I give tours to at the Air and Space Museum say, "That was really a great tour." So we can have our legacy in many different buckets. Just this morning, my great nephew contacted me, he's applying to colleges. He sent me his resume and said, "Uncle Bill, I'd like you to take a look at this. I want you to review it before I send it out because I respect your opinion." What more can you ask for in legacy than something like that? So I scribbled up his resume, put lots of marks on it, sent it back, had a quick conversation with him. I think that's a life I affected today. And that's what your legacy should be all about.

Drezden: That's not a simple answer, you made it simple to understand. I say for this podcast, the social media, the website, the post-production, as somebody who has no 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. And you're taking that a step further, legacy isn't about some grand arc you build to yourself. It's the little nudges you make throughout your life that make it better for everyone else. Holding the door open for someone is just as important as giving away your entire net worth to an organization. It's binary, if you can help, you help.

And tying it all together, the legacy all ties back to the legacy of Blalock, Thomas, and Taussig. If they hadn't done what they'd done, another reason I love to talk to you is everything you've accomplished and the lives you've affected because of what they accomplished. There's a lot of CHD patients like you at different spots in their life, still making that influence. None of it would have been possible without these doctors and caregivers and researchers who did all this work long before I was born. And it ties back to the awareness issue where people don't even know they have congenital heart defects. There's this universe of patients surviving and thriving who aren't aware or aren't involved in the community, making dramatic differences as they live normal lives.

Bill: When you talk about legacy, I come back to the letter I got from Dr. Taussig when she said, "Hearing from you warmed my heart." That means a lot to me. The Taussig and Blalock and Thomas collectively, in their individual ways, had such an influence on the medical world and the cardiology world in particular. I feel very fortunate that they all crossed paths at one moment in their lives, and I was there with them when it happened. If you want to talk about legacy, I think about those things a lot. The legacy of CHD care and the legacy of CHD patients.

Drezden: The little nudges on a million different people making a million different nudges on a million different lives. And that's why awareness is so important, because all of this is already happening in the background. It's just making sure people are aware of it so the patients that need care know where to find the ACHA, and that the ACHA can keep trucking.

It's been an absolute pleasure talking to you. But before I let you go, we've already discussed what CHD means to you and touched on it with legacy. But I want to give you a chance to answer that directly: given everything we've discussed and everything you've done, what does CHD mean to you?

Bill: Well, 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 just feel fortunate that I've had the life I've had with CHD, and I feel very fulfilled by it in many ways. I just want to be able to help impart that to others so they can have the fulfilling life I feel I've had. Going back to what my mother said, you're different, but you're not special. You're not unique. I just want people who have CHD to get the most out of life. Make sure they take care of themselves. See the right doctors. Go to the right places. Stay involved with the community. And I think life will be fulfilling for people if they do that. I just hope that happens.

Drezden: All you want is CHD patients to have access to the right care, the right resources, and the right help when they need it, to live their best life. And that is what the ACHA does. Bill, it's been an absolute pleasure.

Bill: I want to thank you for giving me the opportunity to talk with you and share these thoughts. I hope it helps people as we take that next step.

---

[OUTRO]

Drezden: 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 that was part three, the final episode of this miniseries. Thank you all for listening to all three parts. And 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.