Listening to Your Heart with Amy Johnson

Show Notes

It’s Heart Month—a busy and exciting time here at the Alliance as we gear up for Heart Valve Disease Awareness Day on February 22nd. In the spirit of the season, we’re thrilled to be joined by Amy Johnson, President and Director of Rock from the Heart. Amy will share their incredible efforts to educate people about aortic and heart valve disease, support families affected, connect patients with vital resources, and inspire us all through the healing power of music.

Episode Transcript

Katrin:

Hi, and welcome to This Is Growing Old, the podcast all about the common human experience of aging. I’m Katrin and I’ll be your host today. It’s Heart Month, a busy and exciting time here at the Alliance as we gear up for Heart Valve Disease Awareness Day on February 22nd. In the spirit of the season, we’re thrilled to be joined by Amy Johnson, president and director of Rock From the Heart. Amy is going to share her incredible efforts to educate people about aortic and heart valve disease, support families affected, connect patients with vital resources and inspire us all through the healing power of music. I have gotten to work with Amy firsthand and watch her do this. She is incredible. All the work that she does, she is a machine. But speaking of music, this year’s Valve Disease Day flagship event on February 22nd is guaranteed to get you on your feet. We’ll share more about that later.

Amy, I’m so happy you could join us. Could you share a little bit about Rock From the Heart and where your journey as an advocate for heart Health began?

Amy:

Yeah. Sure. And I’m so excited to be here with you and be able to share this information. You know what? I’ll start with a phone call in 2015 after my husband’s routine physical. And he called me and he said, “There’s something wrong with my heart.” Doctor heard a murmur, something that had been heard for years. He went and did the regular testing and one of those deals, he walked in healthy and then gets a phone call saying, you’ve got aortic valve disease and an aortic aneurysm that’s going to require surgery. So, really in an instant, your life changes and you get the diagnosis. You start to look for information. Really, the journey began with all the information and trying to find answers through two years of watch and wait, and then you finally get to surgery day, and we were both scared and then you’re finally there. And Pete looked at me and he goes, “Amy, when I get through this, I want to do something to help other people so that maybe they’re not so scared.”

And that’s really where it all started is like knowing that you can have this lurking under the surface or under the hood, as they say, with zero symptoms. And within an instant, your life turns around and you need a life-saving surgery.

…it’s not just the entertainment. It’s inspiring hope and fostering community, reminding everybody that life after a diagnosis can be extraordinary.

Katrin:

Absolutely. So, why is music so essential to the Rock From the Heart Mission? How did that come into play?

Amy:

Well, music has always been a huge part of our lives. I don’t know if I’ve ever told you this, but Pete and I actually started dating back in the 1980s when he’s in the Big Hair MTV days. And things didn’t work out that time. I met him inhibiting at a bar when his band was playing. And 25 years later, he found me on Facebook. We knew immediately that this was it, and we got back together. He hadn’t played drums for a couple of years, but one night we went out and we ordered him a set of drums and he started playing drums again. So, music has always been a huge part of our lives. It’s how we met. It’s what has been an integral part of who we are. With Pete being a musician, he’s a drummer, during those watch and wait years, the two years between diagnosis and surgery, music was the medicine that we needed. It gave us the comfort and the strength and a way to cope with that uncertainty.

We’d hop in the car and go to Toledo, Ohio to see a music festival or see what shows you could see, and it really was something that gave us strength. And so much more music, music, music. It’s such a powerful force for us. Nowadays, Pete does drum in the opening band at every Rock from The Heart Show, and that, for those people that are attending, Pete’s up there as a living, breathing example of how good life can be after heart surgery. Music connects people in such powerful ways. And for us, it’s not just the entertainment. It’s inspiring hope and fostering community, reminding everybody that life after a diagnosis can be extraordinary.

Katrin:

That is so inspiring. That’s incredible. And I didn’t know that about you and Pete. That is amazing. What a great [inaudible 00:04:16].

Amy:

Surprise, I saved that for you.

Katrin:

Yeah. Well, you have brought everyone from Sebastian Bach to Night Ranger to the stage in support of aortic and valve disease awareness. So, a question that I’m very interested in is what Rock From The Heart concerts have been your personal favorites?

Amy:

Well, they’ve all been fantastic, but I’d have to say that it would’ve been our first concert with Sebastian Bach in Fargo. We like to call that the night Sebastian Bach came to dinner. Sebastian actually joined us for the dinner, the night before the concert. It gave everyone a chance to get to know him. He got to know more about the cause, met with our survivors, and really made a connection. He’s the first of our talent to ever say aorta and aortic valve disease from the stage. But of all the headliners, he’s the one we connected with the most. And then last year when Gina Shock of the Go-Go’s came, since day one we started on this journey. I didn’t know that she’d had heart surgery back in 1983, but Pete did.

So, once we learned that she’s been on my list of survivors I would most like to connect with. So, last year I decided to just, I threw a dart, I emailed through Facebook and lo and behold, I got a reply back with a phone number and the rest is history. Gina and Pete double drummed on several Go-Go songs last year. So, there you’ve got two living, breathing, open heart surgery survivors drumming in perfect harmony and tandem, and it was, we got the beat. It was amazing.

Katrin:

That is incredible. So, we’re talking all about heart valve disease, but three out of four Americans actually know little to nothing about it. So, why is it so important to amplify, not only the risks, the symptoms and the treatments for valve disease, but the lived experiences of those with valve disease like Pete on the stage and Gina Shock on the stage drumming? Why is that so important?

My first words to anybody who comments or connects with us is just breathe. First of all, just breathe.

Amy:

Well, it just takes me back again to that day, that fateful phone call in 2015 when somebody who’s living his life perfectly healthy one day, walks out with the diagnosis of aortic valve disease and knowing you’re going to need surgery to replace that. It was terrifying. It was scary to find stories, to find good information. I wanted to see a person living. I wanted to see a person doing what they used to do after surgery, and it was so hard to find back in 2017 and 2018. Those stories of hope, those stories of people who survived it. The fear is paralyzing and knowing how big a part mental health plays in that healing process, we need those hopes, we need those connections and to be there for each other. So, by connecting with people on all levels of their heart valve diagnosis journey, we’re able to catch people where they are.

Really that goal is when somebody walks out with this diagnosis and it’s, as we know, in most cases, it’s a surprise. It’s not expected. It’s not something that they’re looking for. When they go to Google to start Googling their symptoms or finding out about it, we want them to not find the stories of doom and gloom. We want them to find the stories of hope. And we want to make sure that they go and get their annual physical and not be afraid of that. Because, again, showing the stories of somebody out there that says, “I’ve been through this. I’m this many years past my surgery, I’m still here. And you know what? My life is pretty much what it was before the surgery.”

Katrin:

Yeah. Coming out on the other side just as happy and hopeful, and healthy. Incredible. Well, do you have any advice for those out there who’ve been recently diagnosed with aortic or heart valve disease?

Amy:

My first words to anybody who comments or connects with us is just breathe. First of all, just breathe. And I’ll share the words that Pete’s doctor said to us after his diagnosis. He got the call. We were going to wait two weeks. He got in right away because he says, “I can’t sit here.” We called, we went in, and his primary care doctor, before he even sat down in the room said, “Pete, this is a good thing. We found it and it’s all fixable.” Don’t overthink it. Don’t try to find every solution, learn every little thing because what happens is every little twinge, every little muscle cramp, you start thinking, is that my heart? Some of the comments that you see out there are just every little thing, which is completely natural.

But reach out to people. Find a cardiologist that you’re comfortable with that you can ask the questions to, and understand that everybody’s medical situation is unique. There are so many options for surgery and the science is advancing every day, but know that what’s right for one person might not be best for you. So, arm yourself with that information that’s going to help you make the best decision for you and for your family.

Katrin:

So, this year, Rock From The Heart is falling on Valve Disease Day, on February 22nd. And Rock From The Heart has some very special programming planned. Would you care to share what you have planned?

Amy:

Yes. Well, the event is always, it’s a two-day event where we start on the Friday before, that’ll be February 21st with the day of education, with some phenomenal speakers, and then that’s followed by a dinner. But on Saturday the 22nd, we finally are on Valve Disease Day, officially. We’ve got the Rock From The Heart house band, Aortic Fire featuring Pete Johnson on the drums with special guest Gina Shock of the Go-Go’s. They’re in the opening set. And our headliner this year is going to be the Spin Doctors. So, they will be flying in. So, it’s just a wonderful night. Very, very casual, fun. We start with education and connections, and that’s on Friday and on Saturday, we rock. Also super exciting this year as we’ve got a proclamation from the state of Minnesota honoring the day, and we’re going to be lighting up the I35W bridge to honor the day. So, really big things happening this year. And we’re thrilled that we have attendees coming from across the United States to be a part of this really important and impactful event.

Katrin:

That’s fantastic. Well, I have been listening to Two Princes by the Spin Doctors on repeat, so that is a great band. It’s going to be a great day. But before we wrap up, would you let our listeners know how they can get involved?

…no matter where they are in their journey, between diagnosis and recovery, there’s a place for you here at Rock From The Heart.

Amy:

Yes. We’re always looking to build our team. We’re a small organization with big dreams, and you don’t even have to be in Minnesota to join us. We have volunteers and board members who help with our core initiatives from all across the United States. So, if you’ve got some skills and you feel passionate about the cause, we’d love to hear from you. We’d find a place for you. You can find us on social media. Always, of course, having those people following us, helping us share the information and giving us feedback on what do you want to hear? You can go to our website rockfromtheheart.org and subscribe to our newsletter, and share your stories. We’ve got an amazing blog writer who helps us to connect stories. We love to share those survivor stories. We love to share the stories of hope. And even if you’ve lost someone or found connections in this community, we really want to be that force of hope and be there to find people. Like I said before, no matter where they are in their journey, between diagnosis and recovery, there’s a place for you here at Rock From The Heart.

Katrin:

Well, and now we have two questions that we like to ask all of our guests. So, the first is, when you were a kid, what did you imagine growing older would be like?

Amy:

Well, when you’re a teenager, you think 30 is old, you think 40 is old, you think 50 is [inaudible 00:12:21]. As the years go on, you realize that it’s not so bad. First of all, I thought I was going to be a movie star and probably retiring in glamour by this point. Well, that didn’t happen. So, I’m casually living my dreams in other ways. But you thought things were going to just slow down and you’d be sitting on the chair watching TV, making spaghetti and grand babies. It’s funny what we think when we’re kids and what the reality of getting older really is and can be.

Katrin:

Yeah. I don’t think I even ever thought I was going to grow older when I was young. So, what do you enjoy most about growing older now?

Amy:

Do you ever get the question, well, I’ve got two kids, and people always ask you, what was the best age for your kids? And I tell them, there’s wonderful things from every age, all along that spectrum. And the same can be said about growing older. All of these experiences that we’ve gained, the relationships that we gather, and honestly, I feel like I’m 25. I turned 57 this year. I don’t feel it. It’s a number. It really is. It’s a number and what you find in your heart and following those dreams, and pursuing your passion, I didn’t start doing what we’re doing here at Rock From The Heart until a few years ago. Who thought how drastically my life would change from being a technical telecom consultant to running a nonprofit organization, some teaching on the side and hanging out with the people I used to watch on MTV. Dreams do come true.

Katrin:

Wow. I don’t know how you do it all. Everyone has gotten to hear just a very small part of everything you do. I am convinced that you’re superwoman or that you have more hours in the day because the work you do is incredible. So, thank you again for joining us. And thank you to everyone who’s listening. If you’re interested in hearing more of the, This Is Growing Old podcast, you can find us wherever you get your podcasts. And don’t forget to raise awareness about Valve Disease Day on February 22nd and throughout the year.

To learn more about Valve Disease Awareness Day events happening throughout Heart Month, visit ValveDiseaseDay.org.