Voices of Strength: Tyler Šajdák's HLHS Journey and Advocacy in the CHD Community

Tyler Šajdák wasn't supposed to grow up. Born with hypoplastic left heart syndrome in 1993, he was part of a generation receiving experimental surgeries with uncertain outcomes. Today, at 31, he works as an academic advisor, pursues a master's degree, and serves as a powerful advocate for the adult congenital heart defect community.

"I've been told by people that just by looking at me, they wouldn't know that I had a heart defect," Tyler shares during our conversation. This invisibility is both a blessing and a challenge for the growing population of adult CHD survivors who must navigate a healthcare system still learning how to treat them.

Tyler's involvement with Single Ventricle One (SV1) - the recently unified organization combining pre-Fontan and post-Fontan networks - puts him at the forefront of efforts to improve care for adults with complex heart conditions. "I think my role is making sure the other planners are thinking of how the adults can be served as well," he explains, describing how medical conferences historically focused primarily on pediatric care.

Our conversation delves into deeply personal territory as Tyler recounts his experience with vocal cord paralysis following surgery and the profound moment when his grandfather, after suffering a stroke, heard Tyler speak with a full voice for the first time shortly before passing away. We also discuss his recent transplant evaluation, where doctors delivered some surprising news.

For anyone living with CHD or caring for someone with a heart defect, Tyler's story offers both practical guidance and emotional resonance. From balancing health concerns with career ambitions, to finding community with others who share similar experiences, he demonstrates how adults with congenital heart conditions can thrive while helping shape a medical field still discovering what lifelong care looks like for this first generation of survivors.

Connect with the SV1 community through their upcoming patient day in Indianapolis this October - whether you're a patient seeking connection, a parent looking toward your child's future, or a medical professional committed to advancing care standards for this unique population.

Helpful Links mentioned during this episode:

Boston Children's Hospital Single Ventricle Family Day at the New England Aquarium: https://ow.ly/omax50WAN8A

Kristi Pena’s episode about Barth Syndrome: https://www.buzzsprout.com/62761/episodes/398916

Link to register for SV-One Fall 2025: https://www.svone.org/events/fall-2025-learning-session

Link to "The Heart of a Heart Warrior" book series on Baby Hearts Press. Tyler's essay is in Volume One: Survival: https://babyheartspress.myshopify.com/products/the-heart-of-a-heart-warrior-volume-1

Chapters

• 0:00 Tyler Sajkak 2025 (audio)
• 3:34 CHD News
• 4:12 Interview with Tyler Sajdak
• 20:01 Segment 3
• 40:38 Conclusion

Transcript

[00:00:00] 

Tyler Sajdak: I've been told by people that just by looking at me, they wouldn't know I had a heart defect. Which is a good thing generally. Even my cardiologist told me last time I saw him, that if he saw me on the street, he wouldn't know I had a heart defect. 

Anna Jaworski: Hello my friends, and welcome to Heart to Heart with Anna. I am Anna Jaworski, a heart mom to my amazing daughter who is post-Fontan and just turned 31 years of age this month--August, 2025. I'm so glad you're joining me today. Before we dive into our conversation with today's guest, Tyler Sajdak, a single ventricle survivor, academic advisor, and passionate advocate for the congenital heart defect community, I'd like to take a few minutes to share the story of another heart mom and some exciting news for our community.

Today I want to share the story of [00:01:00] my friend Kristi Pena. Kristi is a heart mom and a fierce, rare disease advocate. Her son has Barth syndrome, a mitochondrial disease that is always fatal without treatment. Kristi has seen firsthand how a drug called elaprimide has transformed her son's life.

Families have called it a miracle. The science is strong, the safety is clear, and children are alive today because of it. Yet the United States Food and Drug Administration, often called the FDA, recently denied a reconsideration request for this drug's approval. To make matters worse, the company that produces it is collapsing.

Imagine what it feels like to watch a treatment that is saving your child's life slip through your fingers, not because it doesn't work, but because of bureaucratic red tape. Kristi isn't giving up. She and other families are preparing to go to Washington, D.C. in peaceful [00:02:00] protest. As Kristi said in one interview, "It's not a matter of if this disease is going to kill my son.

It's a matter of when. We're just not going to give up." Right now, these families are urging oversight from the United States Congress, the Secretary of Health and Human Services, and the Commissioner of the FDA, and they're asking all of us to help too, by amplifying their voices, sharing their story, tagging lawmakers, and keeping the pressure on.

I wasn't able to record a full episode with Kristi this time, but I reached out to other podcasters. I'm thrilled to say that the team at "Share the Tea Tuesdays" immediately agreed to feature Kristi and her story. I'm so grateful her message will be heard on a larger stage. If you have the ability to help Kristi and others living with birth syndrome, I encourage you to raise your voice.

Share Kristi's story. Speak up about the importance of access to life-saving [00:03:00] treatments and let lawmakers know these families cannot be ignored. If you'd like to connect directly with Kristi, reach out to me and I'll be happy to put you in touch with her. And if you'd like to learn more about birth syndrome itself, I'll include a link in the show notes to the earlier episode where Kristi taught us about her son's condition, Barth syndrome, which includes a congenital heart defect. Now onto the news.

CHD News

Anna Jaworski: In other news, Boston Children's Hospital is hosting a free event for single ventricle families on September 20th, 2025. This special day will include educational seminars, updates on advancements in care, opportunities to connect with other families, and even free access to the New England Aquarium.

Lunch will be provided, and the SOURCE team will be in attendance. If you'd [00:04:00] like to learn more or register for tickets, you'll find the link in the show notes. Next up, my amazing guest, Tyler Sajdak.

HUG Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Interview with Tyler Sajdak

Anna Jaworski: Today's guest is Tyler Šajdák. Tyler was born with hypoplastic left heart syndrome. He holds a bachelor's degree in political science and currently works as an academic advisor at the Community College of Allegheny County.

Tyler is also pursuing a master's degree in education at the University of Pittsburgh. In addition to his academic and professional pursuits, he is involved in the Single Ventricle Patient Day Planning Committee and is part of the [00:05:00] NPC-QIC-FON committee.

When Tyler's not working or studying, he enjoys watching and playing sports, particularly attending Pittsburgh Pirates games and participating in local slow-pitch softball leagues. He also enjoys unwinding by watching movies and television shows.

Tyler contributed an essay to "The Heart of a Heart Warrior" about his experience with vocal cord paralysis after surgery, and he is passionate about raising awareness and supporting the single ventricle community. Welcome to "Heart to Heart with Anna," Tyler.

Tyler Sajdak: Thank you for having me, Anna.

Anna Jaworski: It's absolutely my pleasure to have you here. As someone who was born with a single ventricle heart and who now serves on the planning committee, what unique perspectives do you bring to organizing Single Ventricle Patient Day, and how do you ensure that the voices of patients of families are truly represented in that event programming, and isn't it FON-ONE [00:06:00] now?

Tyler Sajdak: We changed the name to SV-ONE, single ventricle one, combining the two. 

Anna Jaworski: Right. 

Tyler Sajdak: 'Cause the NPC-QIC was pre-Fontan and FON was post-Fontan. So they kind of combined into one, starting July 1st of 2025. They officially joined together. As far as the Patient Day and the whole event go, I'm on the planning committee for both Patient Day and the whole event.

So I think my role as a patient in the bigger event, bigger day, is to make sure patients get thought of. Because that wasn't always the case with these congenital heart conferences. It's often about doctors and nurses and how we can better treat the little kids as they're going through the surgeries, and not so much about how the adult patients are doing.

So I think my role is making sure the other planners are thinking of how the adults can be served as [00:07:00] well. And then for the Single Ventricle Patient Day itself, there's a group of, I think five of us that are on the planning committee. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: And so we try to find different topics each year that are of interest to single ventricle patients that are 14 and up is kind of our age group.

So this year we've got a few different ideas. We're still working on getting everything set, but we've got a handful of ideas that are, we've done some of 'em the past, but they're ones that get brought up every year... 

Anna Jaworski: mm-hmm. 

Tyler Sajdak: As things they wanna talk about and learn more about.

So we bring in doctors, we bring in, other patients that have gone through similar things. We try to serve our community as best we can with the sessions we have. 

Anna Jaworski: I wanted to go and I wasn't able to and I'm bummed but I wanna go this year so do you already know when it will be occurring and what city? Because it has moved around in the past, hasn't it? 

Tyler Sajdak: We usually pick a different city each year. That's not up to me, so I don't [00:08:00] get to choose where we go. 

Anna Jaworski: It was in St. Louis this last year, wasn't it? 

Tyler Sajdak: It was in St. Louis last year. 

Anna Jaworski: Mm-hmm.

Tyler Sajdak: It's been in Chicago a couple times. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: It's been in Ann Arbor a couple times. But this year it's gonna be in Indianapolis, Indiana, and I believe the dates are October 10 and 11, which is a Friday, Saturday, like the second week in October. 

Anna Jaworski: Who generally goes to this? 

Tyler Sajdak: It's a lot of medical professionals--is the biggest group: cardiologists, nurses, other people in the field.

And then there's also a lot of parents and patients. I think last year we had, 30 to 40 patients, and there are some family members, some spouses and significant others, have joined in the past. Last year we had a session on parenting, and how single ventricle patients deal with the different ways to have children. 

Anna Jaworski: Mm. 

Tyler Sajdak: A lot of the spouses were there for that as well. 

Anna Jaworski: Yeah, have you considered having a session on parenting an adult single [00:09:00] ventricle patient? 

Tyler Sajdak: That was something we tried to get in the schedule for this year.

I'm not sure it's gonna work for this year, but hopefully next year we'll have a session on how to parent a single ventricle child all the way up to adulthood... 

Anna Jaworski: That's not what I mean... 

Tyler Sajdak: ...because I know, I'm sure...

Anna Jaworski: I mean, just focusing on being a parent of an adult single ventricle child.

Tyler Sajdak: Yeah. 

Anna Jaworski: ...because it's very different raising a childhood to adulthood. There's so many different things that you have to go through, and a talk like that is probably going to focus more on how to transition them to being responsible for their own care and blah, blah, blah. I'm talking about once you've already done all of that and now your kid's 30, or now your kid's 50. .

Trust me... 

Tyler Sajdak: Yeah. 

Anna Jaworski: ...as a parent of a 30-year-old... 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: It's a very different experience, and I think there haven't been a whole lot of us parents who have made it that far. We're... 

Tyler Sajdak: yeah. 

Anna Jaworski: ...a fairly small cohort. 

Tyler Sajdak: Yeah. 

Anna Jaworski: But I think there are certain [00:10:00] things that we need to talk about or we need to let the medical community know how we still want to be involved.

Tyler Sajdak: Yeah. 

Anna Jaworski: And I don't think it's really addressed that much because legally we're not the patient. 

Tyler Sajdak: Mm-hmm. Yep. Once they turn 18 or 19... 

Anna Jaworski: 17... 

Tyler Sajdak: yeah. 

Anna Jaworski: ...even. When Hope was in the hospital last time when she was 17, they wouldn't even talk to us about certain things. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: Unless they got her permission and we were all in the room at the same time, even though she gave them permission verbally... 

Tyler Sajdak: mm-hmm.

Anna Jaworski: ...beforehand, they wouldn't talk to us. 

Tyler Sajdak: Yeah. I think part of the issue with that is the sample size is so small. 

Anna Jaworski: Yeah. 

Tyler Sajdak: That there's not a lot of, people studying it or in that position as opposed to the younger groups where there's a lot more patients going through the surgeries and the years after the surgeries, as opposed to us that are 30 plus.

Anna Jaworski: Yes. You need to tell them, "Anna Jaworski told me [00:11:00] she would like to come and she would like a session like this." 

Tyler Sajdak: Yeah, I'll bring that to the group. 

Anna Jaworski: Okay. Bring that to the group. See what they say. I know I'm not the only one because as you know, I'm friends with your mom and I'm friends with a lot of other people who have children who have survived into their thirties and beyond. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: Which is really exciting for us. We were given such abysmal odds that you kids would make it that I think it's left us all a little dumbfounded how awesome you guys have been doing. 

Tyler Sajdak: Yeah. Yeah. I think we've been Guinea pigs for a long time and we're still Guinea pigs to some extent.

Nobody knows at what stage to do what yet when we get to 30. It's such an individual case-by-case basis too, that it makes it difficult to have any hard and fast rules once to get to this age. 

Anna Jaworski: Right. So the NPC-QIC and FONTAN Outcomes Network. I'm so glad they [00:12:00] changed that to SV-ONE. That was so much easier to say. 

Tyler Sajdak: Yeah, 

Anna Jaworski: The SV-ONE, formerly known as the NPC-QIC and FONTAN Outcomes Network emphasize sharing knowledge and build a community among care centers and families. Can you describe a specific initiative or a session that's planned for the Single Ventricle Patient Day that you believe will have a significant impact on attendees and why?

Tyler Sajdak: We're still in the planning stages and we're still trying to figure out which sessions we're gonna do this year. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: But I think overall, getting groups of patients together to meet each other in person is always gonna be beneficial. Growing up a lot of us didn't know other people that were in the same boat as us.

We saw each other in the hospital every now and then, but there really was no connection between patients when we were younger. I know I was in my mid twenties when I first met somebody else who had [00:13:00] HLHS that was my age... 

Anna Jaworski: Oh, really? 

Tyler Sajdak: ...Which is a long time to go before you meet somebody who has... 

Anna Jaworski: Yeah. So you never went to any of the camps or anything like that? 

Tyler Sajdak: No. Nope, I did not. 

Anna Jaworski: Yeah. My daughter didn't either. She wanted to go to regular camps. She did not wanna go to any of the hard camps. 

Tyler Sajdak: Yeah. I always thought I was too healthy for things like that.

Anna Jaworski: That's what she said. That's exactly what she said.

Tyler Sajdak: ESPN used to do the Make-A-Wish episodes of a sports center each summer, and my mom's like, "You should do one of those sometime." And I basically told her I was too healthy to do that, and now I wish I had done it. But yeah, I think just getting to meet each other has been such a blessing for a lot of us.

And each year we get new people that come and they get welcomed into the group just like they were there since the beginning. Everybody I've talked to has said that's the biggest part of going to these events is getting to see each other, at these things from across the country.

You get patients from Washington, D.C. and patients from Oregon and [00:14:00] LA and... 

Anna Jaworski: Texas. 

Tyler Sajdak: ...all these other places across the country--Texas. Yeah. That you wouldn't otherwise know. Maybe you meet on Facebook. 

Anna Jaworski: Yeah. 

Tyler Sajdak: Or someplace like that, but you don't really get to know them. 

Anna Jaworski: I interviewed a young lady who came all the way from Australia to attend. 

Tyler Sajdak: Yeah. 

Anna Jaworski: The SV-ONE this year, so... 

Tyler Sajdak: mm-hmm. 

Anna Jaworski: ...that was pretty cool. Yeah. 

Tyler Sajdak: Yeah. 

Anna Jaworski: So it's not even just a national... 

Tyler Sajdak: mm-hmm. 

Anna Jaworski: ...conference.. You're getting people from all over the world. 

Tyler Sajdak: Yeah. 

Anna Jaworski: Which I think is amazing. 

Tyler Sajdak: Yeah. We usually have a Zoom session as well. So I can join on Zoom. 

Anna Jaworski: Mm. Okay. 

Tyler Sajdak: And we've had people from all over the world attend on Zoom.

Anna Jaworski: I love that. Have you ever attended the ACHA conferences, 

Tyler Sajdak: I have not, no. I have not attended any of those conferences, 

Anna Jaworski: The Adult Congenital Heart Association conference. I'm surprised you haven't attended any of those.

Tyler Sajdak: I've been very busy with school and work and everything else, so 

Anna Jaworski: Sure. 

Tyler Sajdak: It's kind hard to get time off. 

Anna Jaworski: Yeah, I get that. Ever since COVID, things have been messed up. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: The [00:15:00] conferences haven't been put out the same way that they were before. 

Tyler Sajdak: Yeah. 

Anna Jaworski: And yeah, I get it. For me, going to the ACHA conferences... that was the highlight for me, was getting to meet people from all over the world.

A lot of them were people that we had never met face-to-face. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: And this was our first time to do that. 

Tyler Sajdak: Yeah. 

Anna Jaworski: That was exciting. And I'm so glad that the SV-ONE and the Single Ventricle Patient Day give people another opportunity... 

Tyler Sajdak: mm-hmm. 

Anna Jaworski: ...to come together and get to meet each other 

Tyler Sajdak: Yeah, I met a lot of kids that were younger than me growing up just 'cause my parents were well-connected with people. So every time there was somebody they knew who had a child, with a heart defect, they would always call us.

And we'd always go meet with the family. I thought it was nice to do. Good way to reach out and give them some hope. But yeah, I never really met anybody my age until I was in my mid-twenties. 

Anna Jaworski: That's amazing. It's inspiring [00:16:00] to me that your parents wanted to present you as a picture of hope, just like I did with my child, but yeah, it is lonesome when you're always the oldest one.

Tyler Sajdak: Yeah 

Anna Jaworski: That's what makes it really powerful when you go to something like the Single Ventricle Patient Day, and all of a sudden you meet somebody who's two years older than you and you wouldn't think somebody two years older than you is a big deal. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: But it is a big deal when you're talking about hypoplastic left heart syndrome.

Tyler Sajdak: Yeah, yes, it is for sure. 

Anna Jaworski: With so much still unknown about managing single ventricle and Fontan circulation, how do you see events like Single Ventricle Patient Day contributing to ongoing improvements in care and outcomes for patients like yourself? 

Tyler Sajdak: I think the biggest thing is just making sure we're on the radar of the cardiologists and the doctors and researchers.

They spend a lot of time focusing how to improve the first three surgeries and improve the quality of life within the first five years that they kinda sometimes [00:17:00] forget that there's adults. It's very unknown, what's happening with us at this point. With all the liver stuff going on, and, I know some patients have had kidney issues 

Anna Jaworski: Yes. Right now there's a huge focus on the liver, but it's not just the liver that's affected. The kidney is also affected.

Tyler Sajdak: Yeah. Yep. I think everything is affected. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: But I think the liver is the biggest thing for me at least. 

Anna Jaworski: Yeah.

Tyler Sajdak: I think the biggest thing is just making sure we stay in their eyes, in their research and in their care. 

Anna Jaworski: I think that is so important, and sadly, so many of you adults fall through the cracks. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: Because if you don't have a job that provides health insurance, a lot of you don't continue to see the cardiologist.

Tyler Sajdak: Yep. 

Anna Jaworski: Or you end up going to a regular cardiologist. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: Because there aren't enough adult specialized cardiologists throughout the world. 

Tyler Sajdak: Yep. 

Anna Jaworski: So it is important for you to keep yourselves visible, and this is one way that you can be visible 

Tyler Sajdak: mm-hmm. 

Anna Jaworski: [00:18:00] To them, isn't it? 

Tyler Sajdak: Yep. Yeah. It's a big way for us, I think.

And we wanna work with the doctors on things. It's just sometimes when they focus so much on how to improve original surgeries, then we kinda get lost in the shuffle. 

Anna Jaworski: Yeah. 

Tyler Sajdak: So we kind of wanna just stay in front of him. 

Anna Jaworski: Right. Do you know about Tim Nelson's co-op? Have you checked into it 

Tyler Sajdak: A little bit. Yeah. 

Anna Jaworski: Tim Nelson, for those of you who haven't listened to every episode of "Heart to Heart with Anna," Tim Nelson has been on my program multiple times talking about HeartWorks, which is a nonprofit he and his brother started and it's to help people like Tyler, like my daughter, like any of the other single ventricle Fontan patients out there, and they created a co-op where they're allowing patients like Tyler and Hope to register their EMRs, their electronic medical records with them.

So as they are creating [00:19:00] studies, and they're in need of patients for those studies, because Tyler just said you guys are few and far between, they can directly reach out to the patients and say, "Hey, we just started a study that's looking at the Fontan and liver, and you qualify. Would you be interested in this study?"

This is a whole new way of doing research. 

Tyler Sajdak: Yeah. 

Anna Jaworski: What do you think about that? 

Tyler Sajdak: I'm always up for being part of a trial. I've been part of trials my entire life. I've joined a few of those types of groups, and I'm planning on joining HeartWorks as well.

I think it's really important to figure out what's working. Overall, you're not gonna get a hundred percent accuracy with these things just 'cause people are so individual and so different depending on how and where they grew up. But I think getting big pictures of what works generally is important for not only people with heart defects, but people generally.

Anna Jaworski: What do you mean "people generally"? 

Tyler Sajdak: I mean there's a lot of things that can happen to [00:20:00] people health-wise as they get older. Having the knowledge base of different sorts of illnesses can help a lot of people in the future.

Anna Jaworski: You're right, it may be able to be, yeah, it might be overgeneralized to other chronically ill populations. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: Yeah, that makes a lot of sense. Absolutely. 

Tyler Sajdak: Yeah.

HUG Message: Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community, to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at www.CongenitalHeartDefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much [00:21:00] more.

Rejoiner: You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HeartToHeartWithAnna.com. That's Anna@HeartToHeartWithAnna.com. Now back to Heart to Heart with Anna.

Anna Jaworski: Tyler, you're working full-time, going to school, serving on this planning committee.

How do you balance all of these different activities? 

Tyler Sajdak: I'm not entirely sure how I do, but I do. I'm actually only working part-time right now. I'm working 25 hours a week. 

Anna Jaworski: Okay. 

Tyler Sajdak: School is part-time as well. But it's a lot of work to get a master's degree. 

Anna Jaworski: Yes. 

Tyler Sajdak: So it's not easy being part-time and I can't focus all my time on it. But I think part of it is just putting your nose to the grindstone and saying, [00:22:00] "Do you wanna get this done?" Then you have to actually work on it. Which has been difficult for me throughout my life as a procrastinator. I've always tend to put things on the back burner until it has to be taken care of.

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: So that's been part of getting the master's degree is figuring out, how to prioritize what's important to me, how to put that first-- opposed to the fun things that I wanna do. 

Anna Jaworski: Sure. It's always more fun to go to a baseball game. 

Tyler Sajdak: Yeah. Or watch a TV show or going out with friends. 

Anna Jaworski: Sure. 

Tyler Sajdak: But sometimes it's like you have to get this paper done by the weekend or you're not gonna pass the class.

Anna Jaworski: Right, right. So that kind of forces you into a position of "Uh-oh! Better study, better work on my paper. Better..." 

Tyler Sajdak: yeah 

Anna Jaworski: ...go to class." 

Tyler Sajdak: Uh-huh. And knowing that I can do it is very helpful. I've always known that I was intelligent, but I didn't always show it, as my parents will tell you, I didn't [00:23:00] always show it.

Anna Jaworski: Nor does any human being, so... 

Tyler Sajdak: yeah 

Anna Jaworski: ...you're just telling me you're human, Tyler, which, yes, I know you're human. I love that. That's good. That's a good thing. One thing that's been interesting to me is as time has progressed, we're seeing more and more adults with CHD who are being diagnosed with ADHD, PTSD, a number of other conditions that are possibly a consequence of their heart defect or the surgeries that they've had. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: Or they're just now recognizing neurologically that some of your brains took a hit when you had these multiple open-heart surgeries, and they're finally being told, "You have an executive function problem, and that's because of the part of your brain that was affected when you had open-heart surgery." For some people it's been really eye-opening, and it's given them almost a sense [00:24:00] of relief that, "It's not like I'm a bad person or I'm lazy or I'm stupid. There's this reason behind it that makes a whole lot of sense. Has anything like that come up for you? 

Tyler Sajdak: I don't think so. I am in therapy for multiple reasons, not just the heart defect. I can thank my brothers for that. I don't think I've been diagnosed with anything like that. I don't think people suspect it.

'Cause I've been told by people that just by looking at me, they wouldn't know I had a heart defect. Which is a good thing generally. Even my cardiologist told me last time I saw him, that if he saw me on the street, he wouldn't know I had a heart defect. 

Anna Jaworski: Isn't that lovely? 

Tyler Sajdak: Which is always good to hear. 

Anna Jaworski: Yeah. 

Tyler Sajdak: That means you're doing pretty well. 

Anna Jaworski: That's amazing. Yeah. 

Tyler Sajdak: So yeah, I know there are people that do have issues with that and do need help. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: And they should get the help they need. 

Anna Jaworski: Yeah. 

Tyler Sajdak: I'm all for getting therapy or medications or whatever else people need [00:25:00] to help them survive every day.

But I've never had that issue. I think my older brother was the same way as I was being a procrastinator. And we valued different things other than education as we went through school. Even though we both have college degrees, it was not as easy for us as it was for my sister and younger brother.

Anna Jaworski: Interesting. 

Tyler Sajdak: I don't know if that's just the way we were made or what, but 

Anna Jaworski: mm-hmm. And he's not a twin or anything? 

Tyler Sajdak: No. 

Anna Jaworski: You guys have a couple of years' difference, right? 

Tyler Sajdak: Yeah. There's about three years between us. Yeah. 

Anna Jaworski: Mm-hmm. Let's look back in your history just a wee bit. 

Tyler Sajdak: Yeah. 

Anna Jaworski: Because you did write for my book, "The Heart of a Heart Warrior," about your vocal cord paralysis.

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: I'm wondering if that affected you because we know that speech and language development is critical when it comes [00:26:00] to understanding the academics later. it was really hard for people to hear you or for you to make yourself understood for a long time. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: How do you feel that affected you academically as a child?

Tyler Sajdak: I think it was more of a social barrier than it was a academic one. 

Anna Jaworski: Okay. 

Tyler Sajdak: As far as the academics went, I could do all the work. If they gave me a test, I would pass the test usually with flying colors. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: But I think socially it was more of a barrier that way because I couldn't speak up, and I couldn't get people's attention.

If I wanted to talk in class, I had to make sure everybody was as quiet as they could be so the teacher could hear me. So I think I became more introverted than I otherwise would've. 

Anna Jaworski: Sure. Makes sense. 

Tyler Sajdak: Just because I figured if I can't talk, I better at least listen to what the people are saying.

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: So I became a really good listener. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: Which is a good tool to have. 

Anna Jaworski: Yeah. 

Tyler Sajdak: But as far as sharing my story and my thoughts, I [00:27:00] think the 14 ish years that I spent with a paralyzed vocal cord had a much bigger effect on my social growth than it did my academic growth.

Anna Jaworski: You told a sweet story in the book about your relationship with your grandfather. 

Tyler Sajdak: Yeah. 

Anna Jaworski: Can you talk a little bit about that? 

Tyler Sajdak: Yeah. My grandfather was born in 1918, so he was, I think in his seventies when I was born, in 1993. And he had been in the war, and he couldn't hear as well as he used to. By the time I came around, he was always yelling, and he seemed like a grouch, but he was a big teddy bear. 

Anna Jaworski: Aw. 

Tyler Sajdak: My mom was afraid of him for the first few years that my dad and her were married. So you'd have to ask her more about that story. But he had a hard time hearing me specifically. , [00:28:00] And my grandfather had just had a stroke like the week before my surgery...

Anna Jaworski: mm-hmm 

Tyler Sajdak: ...for the vocal cord. And on the way home from the hospital, my parents decided to call my uncle 'cause he was at the hospital with my grandfather. And, he heard me speak. His language skills had taken a dive after the stroke, so he couldn't speak back.

Anna Jaworski: Yeah. 

Tyler Sajdak: But, Michael told me that he was in tears hearing me speak with a full voice for once, and he passed away about a week later after that, so... 

Anna Jaworski: I'm so glad he got a chance to hear your voice. 

Tyler Sajdak: Yeah. So am I. 

Anna Jaworski: That's amazing. 

Tyler Sajdak: I was always one of his favorites, and one of his wishes was me to have a full voice, and he finally got that right before he passed. 

Anna Jaworski: That's so sweet. Oh my gosh, that's so sweet. And it makes perfect sense. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: I'm a grandparent now myself, and of course, you want only the best for your grandchildren and 

Tyler Sajdak: mm-hmm. 

Anna Jaworski: I'm sure he [00:29:00] noticed how difficult it was for you. 

Tyler Sajdak: Yeah. 

Anna Jaworski: Do you think it affected your relationship with your siblings as well?

Tyler Sajdak: My older brother talked enough for both of us. I don't think it affected it too much. My older brother was always the more talkative, outgoing one. And my little brother is also very extroverted. So between the two of them, it's hard to get a word in edge-wise. 

Anna Jaworski: Are you able to do so better now?

Tyler Sajdak: I can do that now a lot better. Sometimes I just let them talk and talk. 

Anna Jaworski: They needed a brother who was a good listener. 

Tyler Sajdak: Yeah. 

Anna Jaworski: That's too funny. So you've moved out of your parental home. How are you doing with the transition of living away from your family? 

Tyler Sajdak: I'm doing really well. Not that I'm glad to be away from my parents, but sometimes it's nice to have some space between them 

Anna Jaworski: Sure. 

Tyler Sajdak: And me. It's about a six-hour's drive. 

Anna Jaworski: Oh, that's a big drive. 

Tyler Sajdak: My parents do it pretty often. [00:30:00] Especially over the past few months, with all the health issues I've had recently with the transplant evaluation, that I went through.

I'm almost down here at least once a month, if not more than that since March. They're always willing to do it, and they're glad I'm not in Los Angeles or someplace like that... 

Anna Jaworski: right 

Tyler Sajdak: ...where it'd have to be a flight so they're close enough that if anything happens, they can be here within six hours, but I think just being able to be on my own and figuring out what I want out of life has been really good for me. 

Anna Jaworski: Sure. 

Tyler Sajdak: And meeting people and finding different places for me to use my talent and skills outside of Single Ventricle Patient Day and the planning committee and things like that. 'Cause that's not all of who I am. It's part of who I am. 

Anna Jaworski: Right? Yeah. 

Tyler Sajdak: So that's not all of it. So I'm glad to be able to be in Pittsburgh and, use this town as a way to get more involved in things I enjoy. 

Anna Jaworski: It's almost like a launching pad for you, isn't it? 

Tyler Sajdak: Mm-hmm. [00:31:00] Yeah. Yep. I think my parents did a really good job raising me and all my siblings, that they can trust us to be on our own without needing a lot of their help.

If I asked, they would help but it's nice to be on my own and worry about my stuff as opposed to trying to deal with the rest of my family all the time. 

Anna Jaworski: It gives you a chance to be on an adult-adult level... 

Tyler Sajdak: mm-hmm 

Anna Jaworski: with your parents instead of still perpetuating the parent-child relationship.

Tyler Sajdak: Yeah. 

Anna Jaworski: Even though you're 30, when you live in your parents' home, it makes it more of a challenge to treat you as a peer. Versus when you're on your own. 

Tyler Sajdak: Yeah. Over the past few months, I think my parents have seen me more than they saw my little brother who lives in the same town as they do. He has a very full schedule as a nurse in the ER. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: And he is very extroverted, so he has to be with friends all the time. 

Anna Jaworski: Sure. He still lives at home, but he's never [00:32:00] home. 

Tyler Sajdak: He doesn't live at home. , He's married. 

Anna Jaworski: Oh. Oh, okay. 

Tyler Sajdak: He lives in the same town. 

Anna Jaworski: I see. 

Tyler Sajdak: Yeah. I think it's about a 10- or 15-minute drive between my parents' and his house.

But he doesn't see them very often. 

Anna Jaworski: Yeah. You mentioned something in passing, and I know my listeners' ears perked up when you said it, so I have to ask, you talked about having a heart transplant evaluation. 

Tyler Sajdak: Yeah. 

Anna Jaworski: Would you mind sharing a little bit more about that with us and where you stand today? 

Tyler Sajdak: Yeah. I saw my cardiologist in January, and over the past year or two years, they've been trying a few different medications to try to keep everything flowing as well, it's supposed to. 

Anna Jaworski: Mm-hmm. Mm-hmm. 

Tyler Sajdak: They got to a point where they decided that I should be evaluated for a transplant. I had the evaluation the first week of May this year.

And then, right around the beginning of June, they told me that I was not gonna be on the list, because my immune system was too [00:33:00] strong, which is something that's normally a good thing, but... 

Anna Jaworski: Yeah. It made me smile. I'm like, "He's doing too well to be on the list." That's what you want to hear, you know?

Tyler Sajdak: Well, if they said, if it wasn't for the antibodies and the immune system, they would've put me on the list. But then I saw my cardiologist. 

Anna Jaworski: Oh, okay. 

Tyler Sajdak: I saw my cardiologist last week. 

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: And he said that, right now I'm good enough that I can wait on getting a second opinion until after I graduate in December, and we'll reevaluate then. So I'm doing really well right now. Still doing all my regular activities, which is good. Still playing pickleball and going to work and doing school, and hanging out with friends here. So as long as I'm doing that, I think I'm gonna be okay without a transplant.

But at some point, I think most of us know we'll all need one.

Anna Jaworski: I remember reading in the literature years and years ago. Is transplant stage four [00:34:00] of the Norwood-Fontan procedure? 

Tyler Sajdak: Yeah.

Anna Jaworski: I saw lots of different studies. Yes, it is. No, it isn't. And it left us all baffled. It's like, well, is it or isn't it? 

Tyler Sajdak: Yeah. 

Anna Jaworski: And the answer is for some people it is. For some people, it's not.

Tyler Sajdak: Yeah. 

Anna Jaworski: You just don't know which camp you fall into... 

Tyler Sajdak: mm-hmm 

Anna Jaworski: ...until you've lived long enough and you're evaluated. So this condition where you have the antibodies in your blood, is that rare? What exactly does that mean? 

Tyler Sajdak: They told me that people who have lots of surgeries and lots of mechanical parts tend to have higher antibody counts. And when you have a transplant, you want to match the antibodies as best you can to the donor, so that you're not dealing with that on top of the other immunosuppressant stuff. So basically, what they said was my donor pool would be really small.

Anna Jaworski: Yeah. 

Tyler Sajdak: So it really wasn't worth putting me on the list. 

Anna Jaworski: Because your antibodies would attack the other heart unless it was a [00:35:00] perfect match. 

Tyler Sajdak: Yeah. And even with that, it would still attack it anyway, which is why you'd be put on the immunosuppressants to try to... 

Anna Jaworski: right 

Tyler Sajdak: ...fight that, but the immunosuppressants wouldn't be strong enough. So between my donor pool being really small and immunosuppressants, it wasn't worth taking a risk at this point. 

Anna Jaworski: Okay. Well, that's good to hear. 

Tyler Sajdak: Yeah. 

Anna Jaworski: That you're doing so well, and it's also good for me, as a mom, to hear that you're getting involved with HeartWorks and... 

Tyler Sajdak: yeah

Anna Jaworski: ...some of these other organizations that are doing a similar thing to what Dr. Nelson is doing, and want to actually be in touch with the patients. So when they do create some kind of study, they maximize the number of patients who are involved in that study. 

Tyler Sajdak: Yep. I agree. 

Anna Jaworski: What advice do you have for other single ventricle survivors who want to be involved in helping you with [00:36:00] promoting education as far as SV-ONE or just getting awareness about heart defects out to the general community?

Tyler Sajdak: I think the biggest thing would be attending SV-ONE or the patient day this fall. I know not everybody can make it. It can be expensive to get to. Registration is free for patients, but just have to factor in the cost of travel and hotel. So I know ideally being there is the best way to do it.

Anna Jaworski: Sure. 

Tyler Sajdak: 'Cause then you get to talk with all of us that are already involved. And then I would find groups on Facebook. I would go to the local care center, see if they're doing anything as far as reaching out. I know there's walks and races as well, across the country with the Congenital Heart Foundation and a few other groups like that.

If I were starting over, I would say, get involved in those groups, and the SV-ONE group, as [00:37:00] well. Try to put yourself in places that you think you would be able to help and whether it's speaking at events or being somebody who can give hope like I do, to other families. There's room for all kinds of people, whether it's outgoing or introverted, or people who like speaking and people who don't like speaking. We need all types of people to help.

Anna Jaworski: Are you somebody who will be speaking at the event this year? 

Tyler Sajdak: I'm not sure if I'll be speaking, but I've spoken at past events. I've spoken at a handful of other non Single Ventricle Patient Day events as well so I'm used to speaking and I enjoy speaking even though I'm pretty introverted myself, and I don't tend to be one that likes being in the spotlight, but for things that are important like this, I don't mind doing it. 

Anna Jaworski: I love that. It's interesting because you said earlier something about how you are not just on a planning committee for SV-ONE, you're not just somebody who works or somebody who's going to school, there's so much more to you than that. 

Tyler Sajdak: Mm-hmm. 

Anna Jaworski: And that is something that [00:38:00] Hope said to me, even as a young child, she didn't wanna be the poster child for CHD or for HLHS, and I totally understand that and respect that. I think maybe that's a unspoken fear that a lot of patients have is that if they attend some of these events, everybody's gonna say, oh, that's the single ventricle person, or that's the... 

Tyler Sajdak: mm-hmm.

Anna Jaworski: ...HLHS person. Can you talk to that? Is that your experience when you go to these events? 

Tyler Sajdak: At the events, since we all know that we each have a similar defect, it's not really spoken about all that much. We tend to talk more about our lives and what's going on, and the football games that are happening, and whatever else is going on outside of our hearts.

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: It gets brought up occasionally with people 'cause sometimes they have issues they wanna talk about. 

Anna Jaworski: Sure. 

Tyler Sajdak: But for the most part, we're regular people doing regular things, talking about the normal things that people talk about at events like [00:39:00] that. We're just friends. A lot of us are friends with each other, so that helps.

Anna Jaworski: Mm-hmm. 

Tyler Sajdak: Each time you go and see 'em in person, there's new things to talk about. People are getting married or having kids or, have family members that are doing those things or getting new jobs. Things like that, that are exciting to talk about. 

Anna Jaworski: Normal everyday things that everybody talks about with their friends.

Tyler Sajdak: Yeah. 

Anna Jaworski: That's what I love about it. So if you're a patient and you're out there and you're like, 'I don't know if I should go to this. I don't wanna be labeled,' it sounds to me like you don't have to worry about that. Everybody already knows if you're going there, you're either the parents of somebody, a professional who works with people who have heart conditions, or you're one of the survivors.

You don't even have to go through that. Do you have a name tag that says Heart Mom? HLHS, SV or anything like that? 

Tyler Sajdak: Name tags, the ones you get from the event, will have your name... 

Anna Jaworski: mm-hmm. 

Tyler Sajdak: ...and your care center on it. 

Anna Jaworski: Oh, okay. It has your care center 

Tyler Sajdak: and then they have optional things you [00:40:00] can place on your badge that has like a parent or cardiologist or patient or whatever else, number of things they have as options.

So you don't have to place your label on if you don't want to. Mm-hmm. But they're optional. 

Anna Jaworski: But if you do, then you know who you're talking to and you don't even have to go through that conversation. Right. 

Tyler Sajdak: Yep. And some will say 'speaker' if they're speaking at the event or things like that.

You can be anonymous if you want. Otherwise, you can announce to the world what you have or what you're doing. 

Anna Jaworski: Uh-huh. I love that. Before we go, can you tell us how others can get involved with Single Ventricle Patient Day? 

Tyler Sajdak: Yeah, I think, I'm not sure when registration will open up. I would keep an eye out for that on Facebook, and I think the website will have it as well-- the SV-ONE website.

Anna Jaworski: Great, and I'll have the link to that in the show notes, friends. So in the description of the show, I'll be including that link. 

Tyler Sajdak: Yep. And then if you're friends with, Meg Didier [00:41:00] or Amanda Harper or Alicia Wilmoth, any of those people that are on the planning committee, they'll all be posting about it on Facebook and Instagram.

Anna Jaworski: Those girls, especially, are really good about putting information on LinkedIn. I'm always seeing Meg and 

Tyler Sajdak: Yep,

Anna Jaworski: Megan posting about that, so that's really helpful too. 

Tyler Sajdak: Yep. 

Anna Jaworski: Great. Or if you're friends with Tyler Sajdak.... 

Tyler Sajdak: Yeah, I don't post a whole lot in general. You can be my friend, but I don't post a whole lot. 

Anna Jaworski: Okay. You might have to break that rule a little bit to help out when it gets closer to the event. 

Tyler Sajdak: Yeah.

Anna Jaworski: Well, thank you so much for coming on today, Tyler. The time has just flown. It's been so much fun catching up with you and learning more about SV-ONE and how you got involved and I'm amazed at how your voice sounds. It's absolutely fabulous. 

Tyler Sajdak: Yeah, it's been great being here and thank you for the compliment and I'm glad to share some more stories of how people can get [00:42:00] involved and how my own life has gone so far.

Conclusion

Anna Jaworski: As I reflect on today's episode, I can't help but think back to when my daughter Hope was first diagnosed with hypoplastic left heart syndrome over 30 years ago. That diagnosis completely changed my life. Like Kristi Pena, I was determined to do everything I could to save my child. For Hope, that meant trying to understand the three surgeries she would need-- surgeries that were still considered experimental in the 1990s.

I feel so blessed that I didn't have to fight the government for access to treatment the way Kristi is having to today. But I understand her struggle deeply, and I learned when Hope's diagnosis shifted to single ventricle, after her third open-heart surgery, that sometimes diagnoses evolve, and we parents have to pivot, adapt, and keep fighting.

That fight never ends. Tyler's story is a beautiful [00:43:00] reminder of what can happen when we do keep fighting. Our children grow up, pursue their passions, give back to their community, and inspire the next generation.

I was also reminded of this just yesterday when I recorded a live episode of Heart to Heart with Anna exclusively for patrons and volunteers. Every month, we gather together for an unscripted conversation around a different theme. This month, we talked about education and careers with members of the CHD community.

 We heard from an adult with nomenclature HLHS, Annie Ulchak, about the accommodation she needed to succeed in school, from a patron in the UK with drug-induced Long QT syndrome, Ayrton Beatty, who shared how Open University opened doors that teachers once thought were closed. And from a volunteer with cerebral palsy, Spencer Keaton, who showed how 504 plans made it possible for him to earn a bachelor's degree. We even heard [00:44:00] from a dad of a single ventricle adult who found his own creative ways to support his child's education. Next month, our focus will be on global CHD perspectives, and I can't wait to hear the stories and insights from our worldwide community.

These monthly conversations are some of my favorite moments, and I hope more of you will consider joining us as patrons or volunteers so you can be part of them, too. And speaking of adults with HLHS, in the next episode of Heart to Heart with Anna, I'll be talking with Steve Hutchison.

Steve shares what it was like growing up with hypoplastic left heart syndrome and how he balances life today as a husband, father, and breadwinner, all while managing a chronic condition. His story is a powerful reminder that while HLHS begins as a childhood diagnosis, it's something people carry throughout their entire lives.

My friends, whether you are a parent, patient, doctor, teacher, or advocate, this community needs you. [00:45:00] We need your stories, your voices, and your commitment to keep moving forward. Until next time, remember my friends, you are not alone.

Conclusion: Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to heart with Anna, with your host, Anna Jaworski, can be heard at any time wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.