Amy Milz opens her heart to us—quite literally—in a candid recount of her life as a congenital heart defect survivor. With grace and vulnerability, she takes us through the paces of her medical odyssey, from the relentless advocacy of her mother to her personal victories in the operating room. Each scar tells a story of resilience and the boundless possibilities of medical science, epitomized by a groundbreaking trial stent that reshaped her destiny. As Amy divulges the critical moments of her surgeries and trials, we are reminded of the strength found in the support of loved ones and the fortitude of the human spirit.
The second act of Amy's tale is as colorful and textured as her artwork, a reflection of a journey through shadows into the light of self-discovery. Her transition from a myriad of jobs to pursuing an art education encapsulates a dance with purpose, one that illustrates the transformative power of embracing one's true calling. Amy's artwork, a series born out of navigating the complexities of Congenital Heart Disease (CHD), is more than a visual narrative; it's a testament to the therapeutic power of creative expression. Her experiences, which extend to the intimacy of her marriage and the importance of self-advocacy, are woven into a larger canvas of life lessons that resonate with all who face their own battles. Amy Milz, through her perseverance and passion, paints a picture of hope and reminds us of the beauty that can emerge from life's most challenging trials.
We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!
We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!
Amy Milz opens her heart to us—quite literally—in a candid recount of her life as a congenital heart defect survivor. With grace and vulnerability, she takes us through the paces of her medical odyssey, from the relentless advocacy of her mother to her personal victories in the operating room. Each scar tells a story of resilience and the boundless possibilities of medical science, epitomized by a groundbreaking trial stent that reshaped her destiny. As Amy divulges the critical moments of her surgeries and trials, we are reminded of the strength found in the support of loved ones and the fortitude of the human spirit.
The second act of Amy's tale is as colorful and textured as her artwork, a reflection of a journey through shadows into the light of self-discovery. Her transition from a myriad of jobs to pursuing an art education encapsulates a dance with purpose, one that illustrates the transformative power of embracing one's true calling. Amy's artwork, a series born out of navigating the complexities of Congenital Heart Disease (CHD), is more than a visual narrative; it's a testament to the therapeutic power of creative expression. Her experiences, which extend to the intimacy of her marriage and the importance of self-advocacy, are woven into a larger canvas of life lessons that resonate with all who face their own battles. Amy Milz, through her perseverance and passion, paints a picture of hope and reminds us of the beauty that can emerge from life's most challenging trials.
We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!
We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!
Welcome to Heart to Heart with Anna. I am Anna Jaworski and I'm a mother of an adult with a single ventricle heart. That's the reason I'm the host of your program. Today's guest is Amy Mills. Amy was born with three heart defects, none of which were recognized by her family's doctor. Her mom, jodi, insisted something was wrong and took her to another doctor, which was the beginning of Amy's journey with heart surgery and all the things that go along with that. Her experiences living as a CHD survivor inspired Amy to find her true passion, which is art, and she has found that her art resonates with others as well. Welcome to Heart to Heart with Anna Amy. Hello, happy to be here. Well, I'm so happy to be talking to you today and I can't wait for us to learn more about your passion. Let's start first with some of the heart surgeries that you've been through. Can you tell us briefly about what surgeries you've had and how you're doing now Horvorens?
Speaker 2:
So the three heart defects I have is ventricular septal defect, subaortic stenosis and a cortation of the aorta. I had four open heart surgeries which were all done at the age of six and younger. My first heart surgery was done a month after I was born to repair the cortation. Then three months after my first surgery I had another one to close my VSD. And they waited the three months because they wanted me to get heavier and bigger because I wasn't gaining weight at the time. Then I didn't have the exceeding tube. Then I had another surgery one month after that and then my last one was when I was six years old, wow.
Speaker 1:
So you're poor mother. I mean, it sounds like it was back-to-back-to-back surgeries.
Speaker 2:
Yeah, she said she lived in two outfits that she took there and she spent all her time at the hospital. She said she went through a lot of books, though, to keep her occupied. I've almost had another open heart surgery in 2013 because when they're going in to look at my stent, they found that I had an aneurysm on it. We planned for open heart surgery, but they're kind of weary about it because of my scar tissue from all the previous surgeries. About a week before my scheduled surgery, they discussed it with Boston Children's Hospital and then they figured I would be a good candidate for the trial stent. That pretty much went inside, normally, went through, and then it kind of slapped against the side, so then it blocked off the aneurysm. I was like a guinea pig for that, so I just signed lots of paperwork. Wow, that's very interesting.
Speaker 1:
That was 11 years ago, and how are you doing now? Are you concerned at all about the aneurysm?
Speaker 2:
No, it's gone pretty much, so it worked out very well. It blocked it right off. I was very thankful for that so yeah, they wanted to try that and then, if that wouldn't work, then they would have done open heart surgery.
Speaker 1:
I'm glad it worked and everything.
Speaker 2:
I'm glad it worked for you too.
Speaker 1:
Wow, because my daughter ended up having an aortic aneurysm as well. She has a single ventricle heart and it got to four centimeters. It was huge and they had to fix it with open heart surgery. I never heard of that. That's amazing. She had it in 2011. So it was right at the same time you were having yours.
Speaker 2:
Yeah, and they had to get the right size stent. They had to order it. It took a couple of months for it to come in and then someone opened it up to look at it and they had someone accidentally throw away the stent. How sad, yeah. So then they had to reorder it, so I had to wait even longer. My aneurysm actually got even larger. It was kind of scary having to wait that long.
Speaker 1:
Now did you feel different? Did you feel tired? How did they know that you had the aneurysm?
Speaker 2:
Yes, I was very tired all the time. I actually just felt just from going through high school and horrible stuff and sudden, after all the time, you know, yeah, not unreasonable.
Speaker 1:
Teenagers are often tired, yeah.
Speaker 2:
I think it happened so gradually I didn't really notice it. I graduated in 2012 from high school, so yeah, it was like a year after that. They found it pretty scary.
Speaker 1:
That is pretty scary, but how awesome that you got to be in this trial and you were one of the success stories. Yeah, you're making history, which?
Speaker 2:
is really, really cool. I'm sure I'm probably just a number in their system. It's pretty neat it is really neat.
Speaker 1:
Not everybody has an opportunity to contribute to medical science like you have, so that's pretty exciting. Having someone be a close advocate for you when you're not able to advocate for yourself is so important. Can you tell us about how your mom, jodi, became somewhat of a personal superhero for you?
Speaker 2:
Sure, when I was born, my mom was suspecting that something was wrong with me. When she saw me, right away, I was her second child because I have an older sister that's three years older and the doctors told her oh no, you know, everything checked out fine, they took me home, but I did eat normal, like normal babies, I ate really fast and then I'd throw everything up. She was concerned and took me to the doctor. But the doctor told my mom oh, you're just a nervous new mom, everything's fine. And they laughed and that didn't really sit well with my mom and she could tell something was wrong because of course I didn't do it.
Speaker 1:
Then when she took me to the doctor, Of course you wouldn't do it in front of them.
Speaker 2:
Because I wasn't eating. So she took me into a different doctor and they instantly agreed something was severely long. So I think at that point it was probably a lot worse. They sent me to the hospital and then they ran several tests. They sent my parents home, because by then it was pretty late at night, they were sleeping and then they got a phone call that I got a lot worse. I had fluid in my lungs and then I had trouble breathing. So then they decided to take me to Milwaukee Children's Hospital breathing. So then they decided to take me to Milwaukee Children's Hospital and they wanted to take me on a helicopter, but it ended up not being available at the time, so they had to rush me in the ambulance, and we're a little over an hour away. So as soon as they took me in they started surgery right away, because I went into cardiac arrest and then that's when they found all the heart problems, so it was very scary time for them.
Speaker 1:
Wow, but your mom was a strong advocate for you and if you had a heart attack in the ambulance, imagine if she wouldn't have fought, for you probably would have had that heart attack at home and she might not have been able to save you, which is really scary. I can see why your mom would be a superhero to you, because she knew I know moms, moms who are listening, dads were listening sure god?
Speaker 1:
yeah, exactly, exactly, those get a second opinion. Yes, you had an awful lot of surgery as an infant, which hopefully you don't remember. You might remember the one when you were six.
Speaker 2:
Yeah, I remember quite a bit from that.
Speaker 1:
But then you went to school, which is really cool. So tell me what it was like for you going to school and making friends after having survived all of these heart procedures.
Speaker 2:
Well, not gonna lie, going to school was pretty tough because we don't live in a big city and at the time we didn't have so much social media.
Speaker 2:
People weren't really aware of everything to do a CHD. So when I began first grade I was still recovering from open heart surgery. I was only allowed to play in the swings and not any other equipment that would do anything with listing with the chest. So when I made friends they tended to get mad at me because I wouldn't play with them and I even had a girl that pulled me and tried to force me onto the equipment, which was really weird. So I lost one of my friends because of that, because she's friends with that girl that was trying to make me play with them.
Speaker 2:
Luckily I became friends with a different girl. She wasn't mean to me and didn't question why I couldn't play on the Playbone equipment. She would swing on the swings with me pretty much every day and then we just kind of came closer from that. And then it up that her mom knew my mom when they went to school together. But because of that she was the first person that wasn't afraid of me. I never watched or wasn't scared of me. So then I got to have sleepovers, so that's pretty nice.
Speaker 1:
Do you feel like the rest of your elementary school, middle school, high school years were fairly normal? Uh, okay, that answer is no, not really.
Speaker 2:
Um, through elementary school ended up making more friends, but a lot of kids would tease me about my scars. And then gym class was definitely hard, or anything Sports, because then I would have to stand off to the side or I wouldn't be able to run continuously and stuff like that. So, being a kid, they had questions. A lot of times I just tell them oh, I have a hole in my heart because I didn't understand everything either. Sure.
Speaker 1:
What has it been like navigating dating and forming adult relationships while being a CHD survivor?
Speaker 2:
Amy long time and we met in high school. That was hard, though, telling him, but he ended up being okay with it because his mom has Crohn's disease, so he was very understanding at the time.
Speaker 1:
Okay, yeah, he understood what living with a chronic illness is like. It sounds like while the children were harassing you and not understanding and had unfair expectations of you, when you came to be an adult you found people were more sympathetic and understanding about your situation is that right, yeah, yeah, I think kids still understand, you know they're just curious and they take things the wrong way or bully and they don't really know what they're doing until they're older, yeah.
Speaker 1:
I think you're right Now. You finished high school and then you went on to become a dental assistant. How did realizing that particular career choice was not a good fit eventually become something positive for you?
Speaker 2:
career choice without a good fit eventually becomes something positive for you. Right out of college, I suppose, I was pressured, like most kids, to find a respectable career path and I felt I wasn't smart enough for a four-year school. I went to a technical school to learn how to do dental assisting. I graduated and found a job. The person that was training me actually decided to stay there instead of leaving. Because of that. Three months of working at that place it kind of looked bad in my resume. Plus, I'm not the best at interviews because I get really nervous. I gave up and continued working at the restaurants I did since I was in high school and then I worked in retail for a while. Then I ended up finding a job as office assistant for a veterinarian that did embryo transfers for cows. So that's pretty interesting.
Speaker 1:
Embryo transfers for cows would be a job in and of itself. I mean, look at what you're teaching me today, amy. Wow, so is that the job that you have stuck with through the years?
Speaker 2:
I think I was there for about five years, but then he decided to retire, ended up getting a job as a custodian at Lakeland University, and then I decided that I felt like something was missing from my life and I thought you know what I'm going to go for my bachelor's. So I started slow, part time, because I didn't know how it would be after 10 years of not going to school. Yeah, that's reasonable. I didn't want to overwhelm myself, so I started part-time schooling and eventually went to full-time now.
Speaker 1:
Wow, so are you in school full-time right now.
Speaker 2:
Yeah, the term just ended, but I have two summer online classes, which is nice because then I can spread it out a little more and I'm not so overwhelmed. What's your major? I'm majoring in studio art and minoring in graphic design, and I love all of it. It's fun, definitely learning a lot from it.
Speaker 1:
Yeah, so tell us about that, because it seems like a little bit later in life you realize, hey, I do have this talent for art, and now you're getting a degree in art. So tell me about it. How did you discover that you had this talent?
Speaker 2:
I started realizing I was pretty good at art in middle school and had a very inspiring teacher that I'm actually in contact with because she does those wine painting adult classes for extra cash. So she still teaches today but she really guided me in discovering my art talent. Then I put in the back burner because I thought, oh, I need to go to school, find a job that pays well which is understandable, because my parents were concerned that I wouldn't be able to have good health insurance. It's definitely important for us.
Speaker 1:
Absolutely. It's your artwork that attracted me to you, amy, because my friend, michelle Rinsmaki, was sharing some of your artwork on her Facebook page. You caught my eye because it deals with the heart, so could you describe one of your favorite pieces that you've done? Because I know you're working on a series right now and, prince, I will be putting a link and hopefully Amy will be sharing some of those pictures with me and I can use those when I'm posting about the show as well, yeah, I can definitely share them with you.
Speaker 2:
I actually just finished the series because classes just ended, so I ended up doing four of them, and the first one I started with is the one that caught your eye called my Life is in your Hands. The skeleton has wires and the sternum that the surgeons use to hold the two halves together after they complete heart surgery. I made those red so they could stand out a little bit. Sure, the skeleton is blue to represent what color people with CHD turn when their blood is under oxygenated. Its hands are in the surgeon's hands to represent how much trust is needed between the surgeon and the patient. The background is orange with yellow lettering of things people have said to me over the years, along with my my own self-doubts and fears. It was very therapeutic to paint, because I put insults and my own fears of feeling deformed or sick. Some things that people have said is you're lucky that you don't have to run, and that happened a lot in high school with their exercise tests.
Speaker 1:
And what they didn't realize was that's one of the things you wanted to do.
Speaker 2:
I wanted to be normal, be able to run without feeling I was super old and out of breath.
Speaker 1:
But the artwork was therapeutic. Yeah, tell me how you found the artwork therapeutic.
Speaker 2:
It felt good to let everything out that was pretty much built up through the years. The first painting I did with insults and my own fears was like the dark side of it, and then after that I made another painting. It's called Face in the Face of Death. Another painting it's called Faith in the Face of Death. In this painting I focus more of the positive aspects of CHD and how it affected me. It made me have so much empathy for anyone struggling with any sickness. It forced me to face death multiple times but against all odds I made it through. During these struggles I never lost faith. So this painting is of a lady with scars from open heart surgery and then she has pink wings behind her. It was like a green background and then I also put wording to it as well. It was more spiritual and uplifting, like the pods' size of it. My third painting was more colorful. I did multiple colors in the background and then I did white paint to mimic EKG. But I'm pretty sure it's accurate and all.
Speaker 1:
Okay, it's an artist's rendition. Yeah, that's your creative license. I just kind of scribbled.
Speaker 2:
And then I painted a realistic looking heart as the main focus of it and then I put lettering on it as well and I put the CHD abbreviation. The most recent one I did is a self-portrait, and it's in black and white with a silver leaf background and I have my scar painted in reddish, pinkish color.
Speaker 1:
Okay, is your scar still red or pink?
Speaker 2:
because my child's scar is very faint a little bit, but it's mainly a white color. So that's my daughter's yes as well. And then I have one on my back too from one of my first surgeries, but that one's really sane yeah, yeah, because that was probably your first one.
Speaker 2:
Do you feel that this series represents your coming to terms with being born with an unusual heart? Yeah, it made me confront it more. You always think about it, but then you get sucked into life and you kind of forget about it, unless you have symptoms or when you take your medications or you have doctor appointments. But sometimes it just hits you because you get a smell of something you smelt in the hospital or someone says something that reminds you of stuff you went through. So it helped me confront it.
Speaker 2:
It was very therapeutic to paint everything and get everything out there, and it was pretty neat to see how much attraction my first painting put forth, because there's women that were messaging me how it made them cry, because a lot of the stuff that I put on was things they've been through too. I'm a part of a zipper sister group on Facebook, so it's for women that have congenital heart defects. I put it on there as well and that's where I got a lot of comments that it really helped them and that they're really interested in purchasing copies of it someday. So that was pretty neat.
Speaker 1:
Amy, you stated in your bio that your marriage came to an end in the summer of 2023. How has the ending of your marriage encouraged you to step back and take a look at all that you've been through?
Speaker 2:
Well, the ending of my marriage was really tough for me. I was with him for 13 years and he was with me through my surgeries and when I had complications with my stents. I'm like he'll be there with me forever, so that was pretty tough. It helped me realize, looking back, that our relationship really wasn't overall very healthy and I deserve better. It helped me focus on my art and helped me find my own style that eventually touched the hearts of other people. So that was kind of nice, and it helped me search deep down what I was interested in, what my purpose should be and what my goals really are and how I should focus on them more.
Speaker 1:
Right. So it sounds like the art was therapeutic, not just for you coming to terms with your congenital heart disease, but also the end of your marriage and a new chapter in your life, which was discovering yourself as an artist and maybe appreciating the strength that you had, that maybe you didn't even realize you had.
Speaker 2:
Yeah, realize you have it. Yeah, it's very different, but in the end it helped me find myself more.
Speaker 1:
So I'm thankful for that.
Speaker 2:
If you were with him for 13 years you must have gotten married straight out of high school.
Speaker 1:
Yeah, because you were really young. We got married in 2016. You knew him in high school. Then Were you friends or had you dated.
Speaker 2:
We met at a football scrimmage. He was actually from a different school, so that's how we knew each other From there it was just kind of a relationship.
Speaker 1:
Before we go, Amy, what is one of the most important things that you've learned that you feel should be shared with other CHD survivors?
Speaker 2:
I think a lot of it is trust your own body and be your own advocate. That was hard for me, just because I'm always so soft-spoken through my life and I always had parents stand up for me.
Speaker 2:
So it was hard for me to adjust into adult care and learn how to stand up for myself Through those situations. Don't be afraid to live your life, Since most of us weren't expected to live very long. You know, I feel like a lot of us cheat death in a way. I feel like a lot of us cheat death in a way, and we get those reminders. A lot of us were close to death multiple times. I think that makes us aware of how short our lives really are, and I think that's almost like a blessing in a way, because then it helps us to live every moment, basically to take in everything and experience everything.
Speaker 1:
Do you think that being aware of your own mortality influenced your artwork? Because I felt that very strongly when I saw the skeletons. Yes, definitely Wow, she's definitely had to confront that fear of your own mortality. Is that something that you feel has helped you to reconcile that?
Speaker 2:
Yeah, as a kid growing up, you don't really think you know you're sick and you know there's issues and your parents don't want to worry you too much and your parents don't want to worry you too much. It's not until you get older until you realize how risky surgeries were and how close you were to dying. And as an adult it was hard for me to process too, because of just out of high school having so many things happen to me at once.
Speaker 1:
Right. How old were you when you had that last surgery with the stent Right?
Speaker 2:
How old were you when you had that last surgery with the stent? I was 19 or 20, because Children's Hospital still treated me, so I think I was 19.
Speaker 1:
But you had to sign all the paperwork yourself this time, didn't you? Yep time, didn't you? Yeah, so that must have been a major difference for you, because when you sign that paperwork, if you read it, it tells you every potential consequence that can happen, and it's definitely and then you can't too.
Speaker 1:
That was kind of scary you were doing a clinical trial, so they probably had even more paperwork for you to sign and even more unknowns. I mean, there's already a lot of announcements when it comes to medicine, but you were taking a big chance, wow. I think that's really awesome advice, though to live your life and not be afraid, and I think you're a living example of how we do need to not take any moment for granted, and if we find something we're passionate about like now you have found your artwork that you're passionate about good for you for going back to school after 70 years and getting your degree.
Speaker 1:
So when you finish this degree, what kind of job will you be looking for?
Speaker 2:
Probably something with graphic design, but I felt like if I wasn't able to find something right away, I might look into getting my master's and counseling and do art therapy and continue working at. Lakeland my master's in counseling and doing art therapy and continue working at Lakeland through that. So yeah, I'm just kind of seeing where life takes me and not trying to rush it and taking my own time on it and enjoying it, because it's neat learning all this stuff and just appreciating it. It's always neat learning new things.
Speaker 1:
And it sounds like you have an appreciation for how art has been therapeutic for you, so for you to be able to share that with others, I think that would be so lovely. I can't believe it's time to conclude the show already, amy. Thank you so much for coming on the program and sharing your experiences and your advice and your artwork with us?
Speaker 2:
Yes, definitely. Thank you for inviting me.
Speaker 1:
It has been delightful. So that does conclude this episode of Heart to Heart with Anna. Thanks for listening today. My friends, please consider becoming a patron or a supporter of our podcast. In our show notes you will see different ways that you can be a patron or a supporter of our podcast. In our show notes you will see different ways that you can be a patron or a supporter. Or you can always go to heartsunitedglobecom and there are donate buttons there. So remember, my friends, you are not alone.
