Becoming Your Own Advocate with Heart Disease Survivor Robyn Peacock

Show Notes

February is American Heart Month, a time to increase awareness around the risk factors, symptoms, and treatments for heart disease. Each year, we are joined by hundreds of advocates, organizations, care centers, and clinicians to share critical resources that may save lives.

As we prepare for Heart Valve Disease Awareness Day, taking place every February 22nd, we’re proud to welcome our guest Robyn Peacock, a heart disease survivor, patient-advocate, and Womenheart Champion. Tune in as Robyn shares her life-changing journey with heart disease and what drives her advocacy work

Episode Transcript

Lindsay Clarke:

Hi everyone. Welcome to This is Growing Old, the podcast all about the common human experience of aging. My name is Lindsay Clarke, and I’m the Senior Vice President of Health Education and Advocacy here at the Alliance for Aging Research. So February’s American Heart Month and also a special time at the Alliance because we lead the Heart Valve Disease Awareness Day campaign. Heart Valve Disease Awareness Day takes place every February 22nd, and we’re joined by more than 125 partners who come together to help raise awareness about the seriousness of the disease, which impacts more than 11 million Americans. Through the work of the campaign and our partners at hospitals and heart centers, professional societies, patient advocacy groups, and more, we help people learn about the risk factors for valve disease, the symptoms to watch for, how it’s diagnosed, why it’s so important to listen to our hearts, and how it can usually be successfully treated in patients of all ages. If you’re interested in learning more about valve disease or how you can get involved in the campaign, visit valvediseaseday.org.

Our guest today can certainly teach us a thing or two about valve disease. Robyn Peacock was diagnosed with serious heart disease, including a congenital abnormality of the aortic valve, which led to many years of tests, monitoring, complications, and eventually surgery. Robyn is now working with one of our Heart Valve Disease Awareness Day partners, WomenHeart. WomenHeart is an organization that is laser focused on improving the lives of women who are at risk of heart disease. And one of their incredibly important programs is the leadership of the WomenHeart Champions. WomenHeart Champions are people like Robyn who can share first-hand accounts of the often daunting diagnosis process, who can discuss lifestyle changes and who can provide educational and advocacy tools and programs that are available through WomenHeart. As I’m sure you’re going to agree, once you hear from Robyn, they are clearly the most qualified to share and support others who are struggling with a diagnosis of heart disease. Robyn, we’re so honored to have you here to share your story.

Robyn Peacock:

Thank you so much for having me. I’m very excited and honored to be here and to be able to help keep the conversation going.

Lindsay Clarke:

Fabulous. Well, let’s dig in. I know you have a lot to share. So in 2007, I know you received a very serious diagnosis of an ascending aortic aneurysm and a bicuspid aortic valve. Can you explain to our listeners what these are and how you were diagnosed?

Robyn Peacock:

Sure. So the ascending aortic aneurysm was a result of the bicuspid aortic valve. The bicuspid aortic valve is a congenital heart defect, and it runs in families. And more research is being done to continue to find the genetic component of it. But it’s very important that if you ever get the diagnosis of a bicuspid aortic valve, to make sure your immediate family members get checked because you want to make sure that it’s caught early. And what that means, a bicuspid aortic valve, a normal valve has three leaflets that open and close together to let the oxygen blood into your body. And during formation before birth, two of those leaflets fuse together. So therefore, it’s bicuspid; it only has two leaflets that open and close. And there’s also other bicuspid valve issues, but I specifically have the bicuspid.

When the blood goes through the valve, the valve is struggling to open and close over time, because with only two leaflets, the heart has to work harder to get the blood through the valve and when it goes into the aorta. So here’s the heart, and the aorta comes out of the heart and goes back down into the body. The aortic valve opens and closes to let the blood out. So when it comes out, it hits the wall of the aorta, and the aorta starts to expand and it doesn’t have elasticity to keep coming back into a normal form. Therefore, it starts to create the aneurysm. And I have what’s called fusiform aneurysm, which means it grows the same all the way around. Some people will get a saccular, which is like a balloon that just kind of comes off the side, but basically it’s the pressure of the blood coming out that’s affecting this.

So when you are diagnosed with this, you usually are put on a heart rate medicine that keeps your heart rate low, a blood pressure medicine that keeps your blood pressure low. You’re just trying to protect that connection. And so I was diagnosed in 2007 based as a footnote on a coronary calcium scan that I had done, that I had a dilated aorta. And through pursuing what that was, this is how I got the diagnosis.

Lindsay Clarke:

Thank you Robyn for explaining that. It sounds like it was probably incredibly complicated to get the answers that you needed and to learn more about it. And I know that you had complications along the way. At one point, you developed endocarditis, which is an infection of the heart. Would you tell us about your experience with getting that diagnosed and treated?

Being your own best advocate is the best gift you can give yourself. I always say, you are the expert on you. And throughout the course of the 17 years I’ve had this diagnosis, I’ve become a great advocate for myself.

Robyn Peacock:

Sure. In 2017, I woke up one morning with sharp stabbing pain in my neck, which we went to the doctor, we went to the hospital. It wasn’t a neck problem, it wasn’t a neurology problem, but I had this pain for about 10 days. And then it settled into my legs, and the pain in my legs was so severe I couldn’t walk. I was in a wheelchair. We didn’t know at the time, and we didn’t know for six or seven months, that it was heart-related. So we went to all these different specialists in Los Angeles, we went to orthopedic, we went to neurology, rheumatology, blood cancers, trying to figure out what was going on, my inflammatory markers were rising in my blood counts, but nobody could figure out why.

One of the key signs of endocarditis, which endocarditis is an infection in the heart and it starts as a bacterial infection usually somewhere else in the body. I had a strep infection which came from my mouth, and they thought it wasn’t from dental work, but because I have a compromised valve, I do take antibiotics before dental work. This was just probably from normal brushing and flossing where I just happened to potentially bleed, the strep got into my blood system, and it attaches itself to the valve because the valve is compromised, and it grows what’s called vegetation. But unfortunately, you don’t have chest pain, so you’re not really looking at the heart when you have all these other symptoms. There’s muscle pain, there’s chills, there’s fever. I never really had a high fever, so no one ever did a blood culture. And the blood culture is so different than lab work for regular blood work and you need the blood culture to determine what the blood infection is.

And so over the course of six to seven months, I was in and out of the hospital, in and out of ER rooms. And it’s hard to diagnose, and I know that doctors are trying to do the best, but as a woman sometimes we are dismissed in terms of our symptoms. And I had an ER doctor tell me that I was constipated and gave me some Ativan and MiraLAX, and never asked me to try to walk, get out of the wheelchair, never did any testing, just kind of took a look at me and said, “Well, this is what’s happening to you. Go home.” And so it was frustrating. It was a very long six months.

But thankfully, I was hospitalized for a low hemoglobin where they were going to do a blood transfusion, and I got a secondary bacterial infection, a staph infection from my arm that went in through the IV that they put in, and that popped 103 fever. And then they finally did a blood culture, and so it was diagnosed. But it’s frightening because a lot of people end up with emergency open-heart surgery because it attacks the heart, and because if it goes on long enough and it’s undiagnosed, the damage to your heart is irreversible. So you have to go in for open-heart surgery. And thankfully I didn’t have to at the time, but it definitely helped promote the ultimate failure of my bicuspid valve.

Lindsay Clarke:

I feel like there’s so many lessons that you can help us all learn from this, because you already had that diagnosis and you were being monitored, and yet they still couldn’t get to the bottom of this, and you were advocating for yourself, and it was still an incredible journey. So I feel like there’s a lot to learn from your story, Robyn.

Robyn Peacock:

Being your own best advocate is the best gift you can give yourself. I always say, you are the expert on you. And throughout the course of the 17 years I’ve had this diagnosis, I’ve become a great advocate for myself. And my husband always calls me the hypochondriac who’s always right. And at first it was kind of an insult to me that, “No, I’m not really a hypochondriac.” But when I don’t feel right or if I feel like something is not right, I pursue it and I’m usually right that there’s something wrong.

Lindsay Clarke:

Right. Confirmed hypochondriac is what I would call it.

Robyn Peacock:

I like that.

Lindsay Clarke:

It’s so in fitting with the theme of Heart Valve Disease Awareness Day, which is, listen to your heart. And we mean that literally, get your heart listened to. Make sure someone’s listening to your heart with a stethoscope. Listen to your heart if it’s telling you something’s off, if you have symptoms, but also just listen to your gut. Advocate, if something feels wrong, just go get to the bottom of it.

Robyn Peacock:

So interesting you say that. Yes, listen to your heart because you bring up something that prior to my open-heart surgery that I had in 2022, and I know we’ll get to that, there were times where my heart just didn’t feel right. I felt off, and I knew I had the diagnosis. So I was well into my many years of waiting for the open-heart. But just listen to it, because if you sit quietly or you sit still with yourself, sometimes your heart, you can just tell your heart’s… I call it your heart’s hurting. It’s thumping a little harder, or it feels like it’s up in your throat. Walking. A lot of times with exercise, I would get this chest, it was not pain, it was kind of a tightness that would just go right across here.

And it wasn’t like an elephant was sitting on me. People have asked, “Why didn’t you go to the emergency room when this happened?” Because it was more of like they always tell you the scale one to 10, it was like a two. Just some pressure. And it would work itself out while we continued to walk and go on our hikes. So my cardiologist was well aware of this, and that was part of the symptoms that really exponentially got worse the six months leading up to my open-heart surgery open. So do listen, and know how you normally feel versus when all of a sudden something just feels off, get it checked.

Lindsay Clarke:

And we talk about this a lot with valve disease, that a lot of times the symptoms are even more subtle. Just getting a little bit more fatigued or out of breath when you shouldn’t be. And it’s really easy to dismiss them. It’s easy for healthcare professionals to dismiss them as a normal sign of aging or a cramp or whatever it is. So if something feels wrong, go get it checked out. There’s no harm.

Robyn Peacock:

That is right.

Lindsay Clarke:

I’d love for everyone to hear more about what led up to the surgery and what the surgery was like.

I started to get that chest tightness a little more. I started to go in for my echocardiogram every six months, and I kept thinking that it was going to be my aneurysm that was going to force the surgery. Never dawned on me that my valve was failing.

Robyn Peacock:

I’d been followed for about 15 years, and I’d been having an annual echo with my cardiologist and some appointments here and there when my heart was fluttering or something like that. But generally, really a good 10, 12 years of not a lot of challenges. Leading up to 2022, I started to get that chest tightness a little more. I started to go in for my echocardiogram every six months, and I kept thinking that it was going to be my aneurysm that was going to force the surgery. Never dawned on me that my valve was failing. I didn’t understand, even though this is my disease, I never really researched what happens to a bicuspid aortic valve. But what happens is, it becomes very stenotic. You get severe aortic stenosis. Which now I’m very well aware of, and the valve, it’s harder and harder for it to work properly, so that you get this chest tightness, your shortness of breath increases, your fatigue.

I was sleeping, so starting in about January of 2022, 6 months leading into the surgery, I started sleeping three hours an afternoon, just extreme fatigue. And I started to feel really old. And as a patient with an amazing husband, partner, care partner, this was the one thing I was afraid to tell him. I was afraid to tell him that I felt 30 years older by about February, March. I didn’t want to tell anybody because everybody’s lived with this, oh, Robyn has heart problems. Oh, Robyn has heart problems. Super supportive, always there for me. But internally I thought, I can’t put one more thing. This is how I’m going to be living. Not knowing at that time that my valve was starting to truly struggle. I just thought, this is part of the progression of my disease. And you learn to live with it. Your normal continues to evolve to a new normal with the fatigue, with the shortness of breath. One of the biggest pieces was brain fog.

And on the other side of this, it all makes sense now. My body was lacking oxygen because my heart was working so hard to get the oxygen-rich blood into my body that I was just literally, I needed more oxygen. And so the fatigue, the shortness of breath, I felt like I was 30 years older, and it was frightening. It was a little scary because I was only 58, and I thought, gosh, if I have to live like this for the next 30 years, that’s going to be tough. It’s going to be tough on my husband. I felt badly for him because we are very active and I thought this isn’t fair to him. So you go through a lot of… Mental health and heart disease go hand-in-hand. And I want to make a plug, get a therapist. Get a therapist if you have it, because there’s a lot. It’s a lot, and you need someone that can kind of help you sort through it.

So on May 6th of 2022, I went into my doctor’s office for my regularly scheduled echocardiogram, and he said it was time to go ahead and have the open-heart surgery. And I wondered if it was the aneurysm, and he said, “No, it’s actually your valve.” So all of the symptoms he told me that I was having were related to the valve, nothing to do with the aneurysm. The aneurysm, over time, had stayed pretty stable. Grew a little bit. It ended up at about 4.8. They don’t even start trying to fix them until 5.0. So it was my valve that failed first. And I was at Cedars-Sinai, and there’s a doctor there, Dr. Trento, that he wanted me to see and have the surgery with. So got the appointment and I was scheduled three weeks later.

And so on June 1st, 2022, I went in and had a cow valve, bovine valve, put in and the aneurysm replaced. I was in the hospital seven days and I was discharged on my 59th birthday, which was the greatest gift ever. And my children both graduated from college. One of my goals from 2007 was that my children would be launched into adulthood before I went for open-heart surgery, in case something had happened. And so they both graduated from college that week, my husband was able to go. I was at home recovering. The minute I learned I was having the open-heart surgery on May 6th, it just hit me. It’s like all faith, no fear. It’s a very scary prospect because it’s an enormous surgery. And we didn’t really talk too much about the options other than it was going to be a huge success. And so we went home and I just took care of myself the best I could. I wanted to be the best me I could be in that moment going under. I walked, I ate better, I slept, I listened to my body.

There is a fear, absolutely, of not coming out of it, or having complications. And so as much as I say all faith, no fear, and don’t Google what’s going to happen to you, just kind of go with it. You do have to be realistic, especially when, in my case, I run the house. So I had to make sure the bills were paid, lists of passwords were done, conversations were had if something had happened. And you’re just so grateful all of a sudden for the time that you’ve had. And I call it my second start. There’s a reason why I’m here. Between the endocarditis and finally getting the diagnosis with endocarditis and not having severe complications for that, and then literally sailing through this open-heart surgery. Easiest thing I have to say, for me, I didn’t have complications. I had an amazing hospital staff at Cedars. It couldn’t have gone better.

And when you get to the other side of it and you wake up and all of a sudden you have oxygen in your body again, you realize how poorly you were feeling, and how you were accepting the normal of how poorly you were feeling. And so the second start in life, it’s just such a gift. I am just so grateful. I’m just so grateful that my surgery went as well as it did and my recovery went as well as it did, and I have a great support team around me. I know I’m very, very lucky. And one of the reasons why I joined WomenHeart was I wanted to help others. I wanted to be a support for others that are facing serious heart disease issues or questions or fears or concerns because not everybody has the support team. Not everybody has a community that can rally around them when they’re down. And so WomenHeart has given me this avenue to help spread the word and be there for people.

Lindsay Clarke:

Well, and to teach them things like, you accepted this normal and it didn’t have to be normal. And what was it like to go into this massive surgery and what have you learned that we don’t have to learn the hard way. I think that’s one of the amazing things about the WomenHeart Champions and everyone who decides to share their story to help others. We don’t have to start from scratch every time, we can learn from each other.

Robyn Peacock:

Absolutely.

Lindsay Clarke:

Tell us a little bit more about being a WomenHeart Champion.

Robyn Peacock:

So about a year ago, like I had mentioned earlier, mental health is definitely a big piece of the heart disease journey. And I had been told that about month four or five post-op, I might enter some type of a depressive period of time. And I did. And I was coming out of it in January of last year, and that’s when this second start appeared in my brain. It’s like, wow, I have this beautiful gift. I have this gift to give to others. I want to help others. So I just started Googling and researching different heart groups, different heart organizations, how to volunteer. I’ve been a non-profit volunteer for 30 years, and I was ready to kind of shift away from the focus that I’d been on for all those years into a new area. And I thought, let’s do WomenHeart. Let’s do heart disease, let’s do that. So searching through Google, I came across WomenHeart.

And there’s many organizations we can volunteer with, and they’re all amazing and everyone’s trying to do the same thing, get the word out and help people with this. And WomenHeart hit the cord of, it’s a patient-led, it’s the number one patient-led advocacy group in the country. Meaning, all of its Heart Champions, are heart patients. And so we’ve walked the walk, we’re walking the walk, we’re still in it, just because I’ve had my valve and my aneurysm fixed. I’ve asked the question, I was like, “Do I still have heart disease?” And I do. I do, because I have to continually, I’ve got to monitor my body for the rest of my life because I now have a prosthetic valve and those types of things. So the WomenHeart offers the opportunity to meet other women that are like me, other peers. We have the support of the headquarters behind us to go out into the world and talk about heart disease, and they give us forums to do it. We have these red bags of courage that we pass out that has all sorts of information about heart disease and symptoms and those types of things.

The WomenHeart was just, it was the right fit for me. It feels grassroots because we’re all on the ground doing this work. But it’s 25 years old this year. It’s been around in this country for 25 years. And we just finished a week of advocacy work on Capitol Hill in Washington D.C., which was super exciting. We have a SisterMatch, which if you’ve got heart disease, you can sign up through our website and they’ll connect you with a WomenHeart Champion that will help be kind of your sister through your journey or answer questions for you or just be there as a support. But we can really make this what we want it to be. And so the talents across the country, it’s amazing what a lot of champions are doing across the country. I don’t know if that really answered your question.

Lindsay Clarke:

Absolutely does. And [inaudible 00:23:56] everyone to check out WomenHeart and to learn more about the Champions. And you’re right, there’s so many organizations that want to help. And that’s why we’re grateful for our partners like WomenHeart that come together on Heart Valve Disease Awareness Day to share these common messages. And to that point, I wonder, I could think of 10 pieces of advice you’ve already given, but what [inaudible 00:24:21] really love to tell someone who’s starting their heart valve disease journey.

…just believe in yourself. Believe your gut.

Robyn Peacock:

So what would my advice be for someone who is starting to navigate the heart valve disease journey? First, make sure you trust your providers and don’t be afraid of hurting their feelings if you want to get a second or third opinion. It’s hard because, for me, I didn’t want to hurt my cardiologist’s feeling when I wanted a second opinion, when my journey was kind of dragging on year after year after year. And I realized, you know what? It’s okay to hurt his feelings because it’s not his body. This is me, this is my journey. I’m the expert of me, and if I’m going to feel more comfortable with more information, go get that information. So first, trust your body, trust your instincts, trust your gut. You are the expert on you.

Look for resources on heart valve disease. There’s so much out there just to learn more about what it is that you potentially have. But don’t over Google would be my suggestion, because websites have varying degrees of information. And, to me, it’s more, get some information so you are educated somewhat when you have the meetings with your provider. Be prepared with your meetings with your providers and your medical team, and if that is bringing in some research you found on the internet to ask them about it, by all means do that.

Keep notes. Keep notes as you navigate the journey and you see different information and you’ve got questions, get support, reach out to these support groups like SisterMatch, like WomenHeart, Heart Valve Voice is another one that has some great… There’s a monthly support call with Heart Valve Voice that people jump in and jump out of. And just believe that you’re in charge. And I am a huge believer in faith. Faith, and trying to just really not letting myself rise to the level of high anxiety, but it’s hard to do sometimes when you’re scared. So just believe in yourself. Believe your gut.

Lindsay Clarke:

And having a support network through these organizations can really help with that anxiety.

Robyn Peacock:

Absolutely. Some of these calls that we’re on, these support calls, like WomenHeart has monthly Zoom support call meetings based on what area of the country you live in. And so we get new players on the calls every month, and they’re just starting their journey or they’re in the middle of their journey. I wish I would’ve known about WomenHeart before my open-heart surgery because I think it would’ve been nice to have verbal communication with other people that had lived my walk. There’s some great Facebook support groups. I’m part of a bicuspid aortic valve support group. I’m part of an endocarditis support group. I try to pitch in when I can, when people have questions. So there’s definitely a lot more resources than there were in 2007 when I started this.

Lindsay Clarke:

Yeah, for sure. Well, before we wrap up, I want to ask you a couple of questions that we ask all of our guests on This is Growing Old. First, when you were a kid, what did you imagine growing older would be like?

Robyn Peacock:

I pictured kind of what I have. My parents were married over 65 years, and they found each other in third grade. I didn’t find my husband in third grade, but I found him in my early twenties. And having him and a stable marriage and a supportive husband and some kids, that was kind of my dream. I didn’t really have big corporate dreams. I didn’t know that, this is so old-fashioned, I didn’t know that we could. So I do, I am very grateful for my life, and this is a little house with a husband and some kids and some dogs, and being able to help others. I’ve always been a helper. I’ve always been in service projects. So this is kind of what I did envision, and I’m here.

Lindsay Clarke:

And what do you look forward to most about growing older now?

Robyn Peacock:

Oh my gosh, now that I have the knowledge and this new second start, I’m super excited for the next 30, 40 years. I mean, my mother is 97, so I don’t think I’m leaving anytime soon. And I’m just excited to help keep the conversation going. And I don’t think age is a number. I think it’s how you feel. I think it’s your mindset, I think it is how you utilize your days. I don’t certainly feel 60. I can’t believe I’m 60. I don’t feel it. I definitely feel like I’m… A lot of times I feel like we’re back in our forties, kind of early kids where we were super active and we weren’t in the teen years yet.

Lindsay Clarke:

Right. Well, I love that and I’m really grateful, Robyn, for you sharing your story and for making it a mission of yours to help others who are starting their heart journeys.

Robyn Peacock:

Yeah, absolutely.

Lindsay Clarke:

So thank you for being here, and thank you to everyone who’s listening. If you’re interested in hearing more of This is Growing Old podcast, you can find us wherever you get your podcasts. And don’t forget to raise awareness about valve disease on February 22nd and throughout the year. Thanks, Robyn.

Robyn Peacock:

Thank you so much for having me.