A Heart on Valentine's Day

Oh, and welcome to the gifted life podcast where we have conversations about organ tissue and eye donation and transplantation. You can always find us guys at thegiftitlife.org. I'm Roy Steele. I'm Joey Boudro.

And I'm Lisa Loretta. Hey, and again, we welcome Lisa back to the guest of OC. I'm a licensed clinical social worker and I'm very happy to be here. All right, coming up here on the gifted life podcast today.

She's a donation advocate. She's a heart recipient. And now we can add author to her list. She's telling her stories to inspire others who are waiting.

And in our mental health section, we're going to talk about spring cleaning your mental health and suggestions on how to check yourself and tips to bloom into spring. I like it all that more right here. Stay with us. All right, give me a new friend here on the gifted life podcast.

And we are excited to introduce her to you and you to her. Haley Steinmel, how are you? I'm good. How are you?

Good. How old are you? I am 25. 25.

And so you're a heart transplant recipient and author. Yes. I love it. That's so great.

We love that you're trying to inspire hope for others who are on the waiting list. So we appreciate you joining us here on the gifted life. Let's talk about your transplants and you just celebrated your eighth transplant anniversary, which is pretty awesome. Yes, on February 14th, Valentine's Day, but also National Domer Day.

Yes, that is beautiful. So tell us a little bit about what precipitated and brought you to needing a transplant. I was born with a congenital heart defect called transposition of a great vessel. And the procedure I had, which was called the mustard procedure, that procedure was the reason why at the age of 16, I needed a transplant.

I think they do a different procedure now. But at that time, I mean, I was a normal life up until the age of 16 when I got sick. And that's when I found out that I would need a transplant someday. And not even a year later is when I needed a transplant.

Tell us a little bit about that time that year. So you were feeling normal. You know, everything, of course, you went, you had a major surgery, heart surgery, but then everything's kind of clicking along and then you start feeling sick and everything. So tell us a little bit about that.

And then how you felt when you heard the fact that you needed a heart transplant. So I got sick in the fall of 2012. I was 16 and I just got sick and I wasn't getting better. And after I believe the third or fourth time at the doctors, they wanted to do x-rays and they could see fluids around my heart.

And they sent me to our local children's hospital, the University of Iowa. Now it's called the dead family's children's hospital. But when I got there, they did all kinds of tests and they put me on some medication. I spent a weekend at the hospital.

That was the first time I ever spent at the hospital besides when I was a baby and had the procedure. And before I could leave the hospital, they did an echo and a doctor came in and was telling me about kids with my heart defect with the procedure that I had. We're now needing heart transplants in their teens, 20s, 30s and even 40s. And they couldn't really tell me when, but they just wanted to let me know.

And I never knew that. So that was a huge shocker to me, very emotional time and just very confused, I guess, because you know, that's big news. And I didn't really know much about organ donations besides my dad's sister who passed away at 17 in a car accident. And that was in the 70s, I believe.

And so we didn't really hear much about donation then. But that's all I knew was my aunt was a donor when she was 17. Otherwise, I didn't really know much about organ donations. Wow, such a caring family for so long ago to them to think of that and to do that when you're not talking about organ donation as much as we're talking about it now.

So I'm just thinking, you know, all these big terms and complicated surgical things that are going on. So walk us through what's going through your heart. And then do you understand at that young age what has to happen in order for you to live, to get that transplant and how did it all make sense to you? So very upset.

I remember sitting on the hospital bed and I was just crying and then my mom was crying. And there was actually a new nurse in the room too. And she actually started crying. And I just remember in my mind thinking, oh no, if I need to transplant, I'll be at the bottom of the list because then I didn't know the facts about donation, you know, you hear all about the myths of organ donation.

So that's kind of what was going through my mind. There's all the myths. And that's when I knew I needed to research more about organ donation. And so yes, I was very sad and upset.

And I didn't want to think about it also because I was in denial since I was only 16 at the time. And I remember when we got back to the room, when we were packing up my stuff to go home, my dad came to get us and my sister and the doctor was explaining why we were upset and stuff because I didn't really want to talk about it. And I didn't want to believe that was happening. And Haley from the information we received or I think maybe I noted it in your book.

You are a twin, correct? Yes. So that's why my Facebook page is actually called Hope for Haley's Heart. It's her name's Hope.

That's special. Tell us about when it's set in. You said you're in denial at this point. You're angry.

You're 16 years old. Talk to wrap your head around. I'm trying to figure out what... 16 is our age to start with.

What am I doing this weekend? Right? What am I doing this weekend? And here you are.

The thrust on you is that it's this potentially life-saving treatment that may never come. Or did any of that resonate with you? And then what has to happen for that to take place? I, to present, had a lot more anxiety.

We had an appointment about once a month with my vocal cardiologist just to see how I was doing. And through the winter with a medicine I was on, I was doing fine. So I kind of put it in the back of my mind like, oh, okay. But I, that summer of 2013, the science I was in heart failure, I mean, you could tell right away by looking at me.

And I knew it was coming because I had so much edema. I was still kind of in denial. But in a way, I knew that it would be soon. Just because once the summer he came, it went downhill.

So I believe in the summer is when I started thinking about it more. Since then the winter I was doing so good. And that summer actually, I mean, it was a great summer despite the fact that I was in heart failure because we went to a Taylor Swift concert. And we actually went on a make-up district to Hawaii.

And even though I was in heart failure, I didn't let it stop me. And I think I was just so used to all the edema and everything that I didn't notice it so much. But once we came back from Hawaii, I believe it was a week later, we were set up to talk to the trans-ment team at the University of Iowa because at that point, I was on so much medicine to try to keep the edema down, that at that point, if I needed to keep it more down, I would have to go to the hospital to get it. So we went to talk to the trans-ment team August 19, 2013.

And that day they admitted me to the hospital. And we did pack a bag just in case. My mom was like, you need to probably pack a few things. We didn't want to believe, you know, I would be admitted that day, but I was.

And I believe that's definitely when it hit me the hardest was when they were like, you have to be admitted today. And we talked to them for a few minutes. And I mean, they could tell by looking at my hands and legs that I definitely needed to get on the list soon. And just for those out there who may not be familiar with what edema is, edema is swelling.

It's when the fluid stays in your tissue and your swell to be uncomfortable. Yeah. And when it happens in the heart, the heart, because it's a little weaker, you know, all of your plumbing, so to speak, all your blood and your vessels kind of just backs up too. So you see that.

And that's usually one of the last last things that you'll see before someone to recognize that someone's possibly going into heart failure. Yeah. So at this point, you're, you know, you're very sick or much sicker. But talk us through that next, I guess that next stage and you get in that transplant.

So once I was admitted that day, that's when my mom and I, we definitely started reaching out to the Iowa donor network and getting more information about organ donation to learn more of the facts. Also, we learned to get on the list. A lot of different tests have to be done. And one of them is a cat.

And that's, I mean, I was somewhat in denial still because I was so sick that I just got used to it. So my body just became kind of used to it where it's being normal. But I remember getting scared again because of that cat, the doctor who was doing it basically told me he had the heart and lung lushing ready in the other room because I was so sick. And of course, to get on the transplant list, you have to have a cat.

So is that something that we could avoid when I was waiting for the hospital having to do all the tests and stuff? I think that's what you've been scared to be more is you have to pass all these tests that you can get on the heart transplant list. And also for the transplant list, you guys know as many others figure out that the list isn't a huge list. There's different sections and it depends how sick you were.

So I was on one A, the highest up on the list you could be because I would put on the highest medication I could be at the time. Also, I was supposed to go home with a pick line of medicine, but I felt something was off. And good thing they listened to me at the hospital because I actually coded a day before we were supposed to go home. And that's when it was decided that I needed to have a heart pump in our bad place.

And I believe they told me I was the first pediatric, at least in the US with my heart effect to have that place on the right side of my heart. And I was also the first to be a pediatric to go home from the university with that our bad. And that surgery took place a few days before my birthday in September. And at that point, after I coded, I just couldn't sleep.

I just wanted to get the heart pump right away because I was scared if I went to sleep that I wouldn't wake up. You mentioned one status one A's just with our listeners out there, essentially that that's the highest, that's the worst, the sickest, most critical patients are reserved that status one listing. So you were very, very critical at the time. I'm surprised.

You know, your heart, obviously the heart pump that them putting that or that in essentially extended and saved your life at that moment. Yeah. And I believe that died from Germany who must have like invented the heart pump actually flew to Iowa to help out with the surgery. And that's why it was held off for a few days.

Yeah. And also they had the Berlin heart ready just in case that our bad went bit in my chest. Because I was I'm like a small adult, I guess they called me. I'm only like five one.

And so the word word that it actually wouldn't fit and that they would have to go with the Berlin heart. You definitely a fighter. I've seen some of the pictures of you and you always had a smile on your face. I don't know if that was for the pictures or not.

But on February 14th, National Doner Day 2014, you received a second chance. You received the gift of life. And so life after has been much different for you. Yeah, it's definitely been a lot different.

Just even now still volunteering for different things and public speaking, starting awareness about heart disease and organ donation. Also I wanted to talk about going home. So I actually got to go home November 4th about two months after I was admitted, which is pretty crazy because now kids are going home like two weeks after getting an R-BAD or all bad. It seems like.

So were you at the same hospital that the entire crowd there at the Iowa Football Stadium turns and waves at the same one? Sadly no. That would actually, it was a big hole around there. It was just being filled up when I was admitted.

But I actually was on a committee for the children's side of the hospital when they were building it to see what improvements they can make to make hospitals better for kids waiting. So that was pretty cool to be on a committee to help make the hospital a better place for kids. You're doing all kinds of cool stuff because I'm looking at a book here. It's called A Heart on Valentine's Day and it kind of stems from your time in the hospital waiting and you wanted to provide hope to others.

So now you can add author to your list, which is pretty neat. So tell us about a heart on Valentine's Day. What's the gist of it? Since I was waiting in the hospital, I always wanted to write a book.

I just didn't really know what the process was. And plus I felt like at the time when I was waiting, there weren't a lot of books about organ donation or teens waiting. And I had younger cousins at the time who it was very hard to explain what was going on for terms that they would understand but not scare them. And in the back of my mind, I guess I always just wanted to write a children's book and I met Brenda at one of the transplant games and we started talking and I told her my ideas about a book and everything.

And so my dream came true this year, my first release. But I'm actually a co-author too and the book because of organ donation. Yes, we see that. So she mentioned Brenda.

That's Brenda Cortez. You remember her? How the all fame. So episode 115, if you want to learn about Brenda and how she got her start and her why, we see that she helped you publish this book.

We've also talked to Brenda about because of organ donation as well. So that's amazing. One of my favorite things about your book, which we have here in the Good to Life podcast studio, so when we open it, you see this precious little boy, Grace's blonde hair of blue eyes and you start by honoring your hero. Tell us about him.

Because of my story and getting a heart on Valentine's Day and it was just a big local story around Iowa in the Midwest, I guess, we actually figured out who it was. My family didn't tell me until actually I got home from the hospital after my transplant because they didn't want me to see the messages through my Facebook page and get upset. And so I had to prepare myself anyways because I figured that someone was going to reach out during that time to tell us more about who they thought was my donor. We started talking to my donor family.

I believe about three years later, we started writing back and forth and then emailing. And we actually met up in Baccora, Iowa, which was really neat because it has a really pretty waterfall. And we met up with them and it is so weird because we're there to meet because their son gave me the gift of life, but we end up talking for hours and hours about even more things than just ordering donation, almost like we knew each other our whole lives in a way. So that was just so cool too.

And to hear stories about Breyer and everything he loved to do, it was just very special to learn where my new heart came from. And so different little things to that work connection was that he actually has twin siblings and I'm a twin. And then his favorite number was two and that's my favorite number. So just little connections like that were really cool to hear.

Oh, and looking at the book, what you can get, it's called a part on Valentine's Day at Barns and Noble Walmart.com. And then there's even a Facebook page, hope for Haley's heart. You can follow her story as she continues to tell that story. But I love the story.

I love the artwork. If you can fill us in on some of that. And I love the real life photos that you've included as part of your story as well. So tell us a little bit about the story, the artwork and why those specific pictures were chosen.

So this story is basically being born with the heart effect and finding out at the age of 16 that I would need a transplant someday. And actually in the book, it shows me going through the process of needing a heart transplant and me getting a heart pump and going home and waiting and then getting the call. And the artwork was really cool because it in a way does look like us, kind of my family. And it actually features my actual dogs in the book that have a lab and a legal and a personal scribe on, which was important to include for me.

But you can see on some pages, I'm reading the book, how it gets a heart. So that was pretty cool that they included some of Brenda's books within my book. And also the pictures at the end, I wanted to show that this really did happen. And here's the proof through some photos.

Well, you did a beautiful job. I know you are proud and you should be proud. And pretty neat that you decided to team up with Miss Brenda, our friend of Hal the Owl. So that must be a pretty good partnership.

I also love how she keeps saying her first book, which indicates to me, it may be more common, right? Yes, I hope so. More about ordination and heart awareness and maybe other topics besides donation. Have you gotten any feedback from anybody who's from any children who maybe have read the book?

My cousin just told me yesterday that his friend wants the book and he loves it because his teacher read it to them since I had her at the teacher and third grade. And he read the class. And everyone that has gotten the book has loved it. Mainly the people who have gotten the book through me are people I know personally.

And so they experienced all of this once I got sick to getting a new heart and what I'm doing today. So they were just really happy to see the book come to life and to know the person who went through this all. I love how your story continues to evolve. What a tribute to Breyer.

You sound absolutely wonderful and from your pictures are absolutely precious. So we wish you nothing but the best. And if you haven't read a heart on Valentine's Day, I'm as Haley. We suggest you check it out again Barnes and Noble Walmart dot com on Facebook.

Hope for Haley's heart. Miss Haley, you're going to do great things. Thank you. We appreciate you.

Thanks for sharing. Here on the get to life. We take a moment to help spring cleaning my favorite word. Not really.

Yes. Yes. Yes. So you know, we talk about spring cleaning and I don't know if everybody does, but a lot of people spring clean their house, which is great.

I love to spring clean. I grew up spring cleaning. Of course, didn't have any choice because mom made us do it. But I think it's important that as we change seasons and we go from the winter to the spring, it's a good time to kind of just do a little mental health check.

And here's just a checklist of a few ideas to help. Check on how you're sleeping. Are you sleeping too much? No.

Are you sleeping? Not enough. Right. Have the shorter days, but you in a sleeping longer period?

We need to work more hours or less hours. So just check your sleep habits and make sure you're getting a good eight to nine hours of sleep and time. How's your appetite and weight? You know, the winter months create opportunities for us to eat more.

We tend to be less active because it's cold outside. Yellow fluff. Yeah. It creates an environment for us to munch and we have all these holiday gatherings and so on.

Yeah. That's right. That other people don't have right after the. It's always something that's always something seems like there is.

Check your energy level. Have you not been getting out enough? Have you gotten a little lazy because it's too cold? Boy, Benj in TV.

Do we stay cuddled up on the sofa with a blanket? Check your energy level. Just, you know, see what you need to do to increase that. So let's get moving.

Let's get some good old vitamin D sunshine. Check the house spring cleaning time to do some mental health spring cleaning based on your little self assessment spring into some changes. Let's work on getting better sleep, better eating habits. Let's get outside and walk and get some exercise and get moving even when cleaning your house.

Open the windows. Get some fresh air. Smell the greenery of the flowers and everything going from brown back to green. So spring clean your mental health for a great spring and sounds great.

I'd be like to land the cat. Yeah. It's my favorite. Especially just after morning we're here, but we're going to jump up after that and get moving.

I like that. I like that. I got to practice. It's info at thegiftedlife.org.

In our question and answer segment today, how long can a person live with a transplanted heart? If their kid doesn't grow with them. Joe? So the answer to the first question, how long can someone live?

It's as long right now as long as they would normally in some situations, of course every situation is different, but I've known people who live between 30 and 40 years, and those had gotten their transplants in the 80s, right? So think about it. To step it out that many years. It's 1980, you know, 1982 and, and so now with the improvements that have been made, especially through any rejection medicine and just in medicine in general.

You know, that's who knows at this point, you know, where it remains to be seen because people live in as long as they would live, you know, otherwise. As far as if they're a child and they receive a heart, does a heart stay the same size? They have they received a heart at five years old once they are 18? And the answer is that heart grows with them.

So, you know, as the as the child grows, the heart grows appropriately for the child's size and age. Wow, fascinating. Yeah, great questions. And if you have any other questions, give us a call at 504-648-3477.

That's what I'm talking about. So, let's take a moment, pause and say thank you to Elliot for the gift of life. And that friends is episode 184, The Gift of Life. Thank you for listening.

Remember, you can always register as an organ, eye, and tissue donor anytime, register me.org. And thank you also to Haley Stymel for coming on, but also for being that change agent that she is, that you know, she was donation advocate, even before she had received her transplant. And then afterwards became a member of that committee that she spoke about for helping better all those children's lives that are there at the hospitals waiting. That's a big deal for a child to do.

And then at the same time, to be able to, you know, have that inspiration, to know that others that are going through the same things that she has gone through, it may be benefit from her writing this book and writing this to inspire those. Trust me more. Do better. So passionate about that.

Right. While she was laying in bed waiting, she, you know, that's when the idea of writing the book came up. That's pretty impressive. We love it, Haley.

The best place to find us guys at our website, thegetsoflot.org. Listen there and find links to listen on Apple Podcast, Google Podcast, Spotify, iHeartRadio, or wherever you listen to podcasts. If you listen on Apple Podcast, please give us a five-star rating. It really helps others to find our podcasts.

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Thanks, guys. This is a production of Louisiana Organ Procurement Agency or LOPA. The Get the Life is hosted by Lori Steele and Joey Boudreau. Our executive producer is Kirsten Heins, producer is Shalom Caraway.

Intern is Rebecca Rannam and we are recorded, engineered and mixed in our Covington Louisiana studio by Troy Perez.