From Survivor to Supporter: Marina Lohri's Tricuspid Atresia Journey in Congenital Heart Care

Meet Marina Lohri, a true trailblazer in the world of congenital heart defects (CHDs). Born with tricuspid atresia, a ventricular septal defect, and an atrial septal defect, Marina’s journey from a life-saving C-section to being among the first in Switzerland to undergo a modified-Fontan procedure at just 11 months old is nothing short of miraculous. In our conversation, Marina unfolds her inspiring story and shares her passion for working at atHeart Medical, where she is dedicated to promoting innovative solutions for those with similar heart conditions.

Navigating the complexities of living with Atrial Fibrillation (AFib) and congenital heart defects is no small feat. Marina opens up about her personal experiences with rapid heart rates and the profound decision to undergo an ablation. As she contemplates the intricate considerations surrounding pregnancy with a congenital heart condition, we delve into the evolving medical advice she received and the diverse perspectives of healthcare professionals. Marina’s story is a testament to the importance of specialized care and the expertise found at top hospitals in Switzerland.

From finance to the medical field, Marina's career journey is a testament to aligning work with personal values and health needs. As she shares her transition to atHeart Medical, a startup focused on congenital heart defects, Marina highlights the rewards of working in a supportive environment that truly understands the challenges of living with CHD. Her advocacy extends beyond her professional life, as she continues to inspire others with similar heart conditions to pursue their passions and find purpose in their careers. Marina’s resilience shines through as she navigates life's challenges with a positive attitude and a commitment to the CHD community.

Helpful Links:

atHeart Medical website: https://atheartmedical.com

Support Organizations:

Mended Hearts: https://mendedhearts.org

(In German)
Herznetz: https://www.herznetz.ch/
Fontanherzen: https://fontanherzen.ch/
Swiss Heart: https://swissheart.ch/

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Chapters

• 0:00 MarinaLohri (Edited?)
• 16:49 Segment 2
• 23:33 Segment 3

Transcript

Marina Lohri: [00:00:00] I hope in five years time to be able to proudly say that I worked for the company that brought the first reabsorbable ASD occluder to heart patients. 

Anna Jaworski: Welcome to "Heart to Heart with Anna." I am Anna Jaworski, and the mother of an adult with a single ventricle heart.

Anna Jaworski: That's the reason I'm the host of your program.

Anna Jaworski: Today's guest is Marina Lohri. Marina was born in Switzerland in 1986 with Tricuspid Atresia and a Ventricular Septal Defect or VSD. At 11 months of age, she had her one and only open-heart surgery, a modified Fontan procedure. She also had an ablation in 2018. After working in hotels and then in the finance industry, she found a perfect job working for AtHeart Medical.

Anna Jaworski: This company is seeking to create a device to treat Atrial Septal Defects or ASDs. Marina feels lucky to live a life rich with a meaningful job, helping others with congenital heart conditions. In her spare time, she loves to travel the world. I came to know Marina through my Kickstarter campaign for "The Heart of a Heart Warrior." Even though I limited my first Kickstarter campaign to people in the United States because I included shipping in the cost of their pledge, Marina ordered the book. When I reached out to her to tell her about my ordering condition, she told me she had a coworker in the United States who could bring the book to Switzerland. The next thing I knew, she and I were sharing stories back and forth, and I said, "You have to come on my podcast."

Anna Jaworski: So welcome to "Heart to Heart with Anna," Marina.

Marina Lohri: Thank you for having me.

Anna Jaworski: I'm so excited to finally meet you because it's been, oh my gosh, almost a year since we met through email. Let’s start briefly by talking about your heart condition because it's very unusual to hear of somebody who has only had a Fontan and not surgery before that.

Marina Lohri: [00:02:40] I'm happy to share my story. My parents didn't know anything about my CHD during the pregnancy. It became apparent that something was wrong a day or two after I was born, and I was transferred to the Children's Hospital in Zurich, where the diagnosis was made.

Anna Jaworski, I'm really surprised. That they were able to diagnose it so clearly

Marina Lohri: I don't know what exactly they diagnosed right away. I just know they did

Anna Jaworski: They knew there was a heart condition.

Marina Lohri: Yeah, they knew there was a significant heart condition and that I had to get surgery

Marina Lohri: as soon as possible. But in 1986, there were not that many surgeons capable of doing that.

Anna Jaworski: Right. My kid was born in ‘94.

Marina Lohri: Yeah.

Anna Jaworski: Even then, there was one hospital in the whole state of Texas...

Marina Lohri: yeah.

Anna Jaworski: ...that was doing that surgery. So, I totally understand. You're lucky that it was diagnosed at all. So, your mother stayed in the hospital for a couple of days after you were born and they picked it up in the hospital.

Marina Lohri: Yes, exactly. And thankfully my mom had a C-section just out of a gut feeling, because I would have probably not even have survived.

Anna Jaworski: Oh, wow. That's amazing. So,

Anna Jaworski: that's Yeah, she just had the gut feeling that she won't have to C-section and not natural birth. Why? I'm not quite sure. Thanks to that I survived. Sometimes you just have to listen to your gut feeling, you see.

Anna Jaworski: Absolutely. Oh, my goodness. Absolutely. And it’s amazing how mothers have this connection with their babies that they've been carrying for nine months in their bodies.

Anna Jaworski: I'm amazed that she was actually given the option because I thought I was going to have to have a C-section. I didn't think I'd be able to birth the baby normally, but I did.

Yeah, I think she was very stubborn about it because she just knew she wanted to have that because with her other child, she didn't have it.

And there were some issues during the birth. So that's why she was like, "I wanted to have it. And they first didn't want to perform it here in my hometown." So, she was like, "Okay, then I go to another city," and then they kind of clicked in and said, "Okay, you can do it here."

Anna Jaworski: Oh, wow. Good for your mom.

Anna Jaworski: What an advocate from the very beginning.

Marina Lohri: Exactly. From the start on or even before.

Anna Jaworski: Yeah. Okay. So, I was shocked to learn that they didn't do anything until they did a modified Fontan. Here in the States, it's not uncommon to do a BT shunt if I'm not mistaken, or now it's called a BTT shunt, but they didn't do that on you. Is that true?

Marina Lohri: [00:04:36] Yes, I think it's because I was born that early. Because nowadays I know all Fontan kids, they all have two or three surgeries at least. And the Fontan is usually done when they're like three years old, but I think they were just trying their best to keep me alive.

Anna Jaworski: Right. You were one of the pioneers,

Anna Jaworski: Marina.

Marina Lohri: Yeah. I think I was really one of the first babies to survive that. Kind of modified Fontan surgery in Switzerland. So... 

Anna Jaworski: Just amazing. Just amazing. Okay. So, you had a modified Fontan and how old were you when you had that?

Marina Lohri: I was 11 months old. So that was really very small. And I was fortunate enough that in our search, it was canceled because otherwise, they didn't know if I would make it until the scheduled appointment, but thankfully for the other surgery being canceled, I was able to make it. And that way, yeah, I had my surgery done at the end of July in 87.

Marina Lohri: And I think I was lucky enough that we had that great doctor, Professor Marco Torino, in Zurich at that time. And he performed his surgery. And he made me one of the first children in Switzerland to survive this complex open-heart surgery.

Anna Jaworski: My daughter also had a modified Fontan. It was called a fenestrated Fontan, at 10 months, but she had another surgery first. She had another surgery at two months of age first, which was a Blalock-Taussig-Thomas shunt. She had that BTT shunt first.

Marina Lohri: Yes.

Anna Jaworski: And then she had the other one. So, my baby would not have survived to 11 months without surgery. There's just no way. She was in congestive heart failure. So, were you in congestive heart failure?

Marina Lohri: I'm actually not quite sure, to be honest.

Anna Jaworski: You wouldn't remember.

Marina Lohri: Yeah, I don't remember it at all.

Anna Jaworski: Right. You were just a baby.

Marina Lohri: Yeah, exactly. I was too small to remember anything. But I think it was also because of being one of those first ones at all. I think back then they just did not have that experience yet to also perform a small kid. I was just kind of lucky to make it through until the surgery date.

Anna Jaworski: Absolutely. It seems like all the stars were aligned for you, and you had angels watching over you from the very beginning.

Marina Lohri: Yeah. And having a great family supporting and being there is also very important and having family there. It is. 

Anna Jaworski: It is so important. In fact, I was just talking with Dr. Dawn Ilardi and she's a neuropsychologist and she was telling me that the number one predictor for a child with a CHD, having a successful outcome is the family. Most people would think, oh, it's the severity of the CHD or it's when they had surgery or it's who their surgeon was. Nope. The number one predictor is the family.

Anna Jaworski: So, you're right. Family is all important. And then you went 30 years. Well, over 30 years before you had another procedure. That's amazing. Can you tell me about the symptoms that you had or how your health changed to let you know, wait a minute, something's not quite right here.

Marina Lohri: Yeah, in my mid-twenties, I began experiencing the atrial fibrillation. So AFib, which for me, came really by surprise because my whole life, I didn't really have any issues with my heart at all.

Marina Lohri: And I just started taking medication when I was around my twenties after the first AFib showed up. So, first time. The AFib was a topic in one of my regular checkups, the doctor told me I should not worry at all because it's just a normal sign of age.

Anna Jaworski: Oh.

Marina Lohri: And for me, it was very confusing because I barely turned 20.

Marina Lohri: And he's like, Oh, that's just normal with a Fontan circulation. That's a normal sign of age. Don't worry.

Anna Jaworski: Okay. You're not feeling like you're supposed to be that old when you're only in your twenties, but...

Marina Lohri: That's what was so confusing to me, but it also calmed me down knowing it's just normal that that happens.

Anna Jaworski: So, what would happen? Would you feel your heart beating out of your chest, or would you be short of breath? What was the exact sign?

Marina Lohri: [00:08:57] I can feel the heart beating irregular and very fast, and I still have it nowadays sometimes. I can stand or sit or like talking to you now.

Marina Lohri: My heart rate could go up to 120, 180 per minute without really doing any exercise at all. And thankfully so far, I've always been lucky the AFib stopped automatically by itself. I never had to have cardioversion, thankfully. But to prevent that we wanted to get, the ablation done in 2018.

Marina Lohri: Just to ensure that I do not have that many AFibs anymore because (in) 2016, '17, I had quite a few of them.

Anna Jaworski: When you say you have quite a few episodes, do you mean you would feel your heart beating fast like that several times in a day or several days a week, or just a few times a month? What do you mean by 'often'?

Marina Lohri: At the beginning, it was just a few times every other month and then it started every week and there were times where it was really on a daily basis, but thankfully, they were always very short. So they were never too long, they were only a few minutes long, but still you start worrying about, 'What's going to happen?,' or 'How is it going to go on?,' because you just don't really know.

Anna Jaworski: [00:10:17] And my mom had AFib. I took her to a regular doctor's appointment, and they hooked her up to the EKG, and they were very concerned because she was in AFib, and she didn't even really know it. She said, "This is the way my heart always feels." And next thing I knew, we were going from the clinic over to the hospital.

Anna Jaworski: Her heart was beating 220 beats a minute, but she didn't feel distressed. It didn't make her feel lightheaded or anything and they realized she had been in and out of AFib, like what you're talking about, for a long time and they wanted to put a pacemaker in her.

Anna Jaworski: For you, they just monitored you. How did that go? Did they send you home with a halter device?

Marina Lohri: Yes. I got a 24-hour Holter for sometimes and sometimes then, of course, it didn't happen. It's always like that.

Anna Jaworski: Right,

Marina Lohri: but...

Anna Jaworski: Which is good. So, it wasn't happening every single day all day long.

Marina Lohri: Exactly, exactly. But then my husband and I were talking about becoming a family, getting pregnant, and the doctors also said for potential pregnancy, there is also a higher risk of having even more AFib. So, this then, really led to the decision to get this ablation done before a potential pregnancy, just to ensure that we at least did everything before.

Marina Lohri: Because the doctor said it's for a potential pregnancy, the risk of having more AFib is very, very high for women with Fontan, so that's why we then decided in 2018 to go for that.

Anna Jaworski: I'm amazed they even said you could have a baby. I have other friends whose daughters have tricuspid atresia who were born around the same time you were born and back in the 80s.

Anna Jaworski: I feel like that shouldn't sound like that was such a long time ago, but it was for heart warriors, especially heart warriors with complex congenital heart conditions. They were told to not expect their daughters to give birth naturally to a child. But that they could still become mothers through adoption or some other process.

Anna Jaworski: So, did they ever talk to you about that? That maybe you shouldn't get pregnant and maybe you should consider adoption?

Marina Lohri: It depends which opinion of which doctor do you want to hear?

Anna Jaworski: I love it. Okay. So, let's start with your pediatrician.

Marina Lohri: With the pediatrician, it was never a topic.

Marina Lohri: Always when I asked, it was, "We'll see. When you're old enough, we'll see." It was always that. And then one day I was like, "Okay, I want to know now," but that was already in the Zurich University Hospital for adults.

Anna Jaworski: Okay. 

Marina Lohri: It was one afternoon. I will never forget that I had a meeting with two doctors, actually.

Anna Jaworski: Uh huh.

Marina Lohri: There was one woman, and she was very straightforward, like, I had an own pregnancy it's so high risk. I would not recommend you. But in case you do anyway, we have new tests that the blood thinner you're on would not hurt your baby.

Anna Jaworski: Oh. Okay.

Anna Jaworski: Well...

Marina Lohri: That was the first thing

Anna Jaworski: ...that must have been reassuring

Marina Lohri: That was the first one. And then I went to the other doctor, and he was like, "Yeah, you can try it. It will definitely be a very high-risk pregnancy. You'll have to get your husband, and we'll talk about it. We'll see if you want to really go down that route.

Marina Lohri: But if you get pregnant, you definitely have to change your blood thinner."

Anna Jaworski: Conflicting opinions here. That's concerning.

Marina Lohri: [00:14:02] Exactly. But I found this a very good example of what it is to live with CHD, which I'm kind of one of the oldest in Switzerland because the doctors just don't know, and they do their best on their own experience.

So. They'll give you their advice, what they would give maybe to their kids as well. None of them meant to be bad or anything. They were just doing their best. In Switzerland we have now maybe two women with Fontan who have kids. I would have been the second one in Switzerland, but the first one in Zurich...

Anna Jaworski: Did you find that you had to go to different hospitals other than the hospital in your hometown to get treatment?

Marina Lohri: I don't go to the hospital in my hometown. I go to Zurich which is about an hour away, and this is the main hospital, here in this area for like CHD patients.

Anna Jaworski: So, what advice would you give to other women who are in Switzerland, or even men, who were born with congenital heart defects, if they want to go to an expert for adult congenital heart care?

Marina Lohri: I think in Switzerland it also really depends on the language, because we have a few different languages.

Marina Lohri: Definitely Zurich is a good place to go, but there are also great doctors in Basel as well. And in Lausanne, this is the French speaking part of Switzerland. So, it really depends on what you have, what's going on. But, if you're not sure where to go to, you can reach out to HertzNet.ch. This is an umbrella organization of all associations around CHDs in Switzerland. This does not only include charities for people with CHD and families, it also includes associations for people who work in hospitals with CHD patients.

Marina Lohri: So, this is what I like about it. It's not just the patients, it's really for everyone. I think they would also then be helpful to point to you in the right direction of where to go or which charity would be the one to join. It's a good organization. They organize every year a heart day in Zurich where doctors, nurses and patients are there.

Marina Lohri: So, it's very good organization.

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 wwwcongenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more. 

Baby Hearts Press: Embark on a heartwarming odyssey with Baby Hearts Press, your gateway to uplifting stories for the C H D community. Introducing “The Heart of a Heart Warrior” book series, inspiring those born with heart defects and their loved ones. Discover “The Heart of a Mother,” “The Heart of a Father,” and “My Brother Needs an Operation.” Books celebrating strength, love, and familial support. Visit babyheartspress.com and be part of our loving community—uplifting hearts one story at a time.

Segment 2

Anna Jaworski: [00:17.29] Marina, how did you first learn about and get connected with atHeart Medical?

Marina Lohri: After working a few years in the financial industry, it was clear to me that I wanted to leave. So, I began searching for a new role as an executive assistant. I hope to find something which is more meaningful to me than just working in the finance industry.

Marina Lohri: And at first, I wasn't really sure where to start, but one evening I was scrolling through all the job ads online and the name of the company immediately caught my attention. I mean, atHeart Medical, when you read that as a CHD patient, you're just like, 'Oh, I need to know what it is.' Yeah. So, I was reading what exactly the company is doing, and when I learned that I was, I knew I have to apply right away because AtHeart Medical is developing the medical device for young patients with ASDs, a condition I know well as it's also part of my CHD.

Anna Jaworski: Wait a minute. First of all, I thought you had a VSD, not an ASD.

Marina Lohri: I have both.

Anna Jaworski: Oh, okay. Because I didn't say that in the intro.

Marina Lohri: I'm sorry.

Anna Jaworski: That's okay. That's okay.

Marina Lohri: I have both.

Anna Jaworski: Do you? 

Mariana Lohri: I have both.

Anna Jaworski: Oh

Marina Lohri: So, in addition to the VSD, also the ASD.

Anna Jaworski: Yeah. So, this seemed like a perfect fit.

Marina Lohri: It was really for me because I knew this is a job that gives me more meaning. It's something that I know I have a complete different relation to it than just working in a regular office.

Anna Jaworski: Right.

Marina Lohri: I sent out my application, not even thinking too long about it because I just knew that's where I want to work. And following my application, I had a short phone interview, followed by in person meeting in Baar. This is where I met Laura, the CEO of atHeart Medical and some other members of the team.

I felt they were nice and very friendly and so committed and they were also passionate about it. So, I just knew I wanted to work there. That was not really a question at all after that.

Anna Jaworski: But what kind of job did you get? You said you wanted to get out of the finance industry. So what did you go into?

Marina Lohri: [00:18:43] Yeah, so I ended up being in the medical industry also as an executive assistant. So I knew it would be very challenging because, yeah, it's now a completely different industry,

Anna Jaworski: Right.

Marina Lohri: And also being in a startup, the company is different than being in a big company where, all the processes are set. But for me, what it was also important, I wanted to work only part-time, also to have enough time for myself and for my other interests and also enough time to rest. This is when I started having my AFibs in 2016, '17, or even a bit earlier. That's when I started to only work four days a week just to give my body and myself enough rest time just to make sure, yeah, I can enjoy life as well.

Anna Jaworski: Right, right. So, are you able to work virtually?

Mariana Lohri: [00:20:42] Yes, I can do that. That’s completely fine. But for me, it's really also important to have an extra day off where I don't need to work. And there's just a different understanding. They just know the heart differently.

I think sometimes they understand the heart better than I do.

Anna Jaworski: Well, that's certainly helpful that they're like, "She's got a Fontan heart. Maybe she's starting to come down with a cold. She needs half a day off," or something like that.

Anna Jaworski: It's nice that you have a company that you work for that understands your condition. And is willing to make allowances for that. I'm sure they're so thrilled to have somebody of your caliber that is working with them, because that just speaks volumes about their integrity and their mission.

Anna Jaworski: Their mission is not only to help people creating this medical device, but even by having people with heart conditions on their staff. I think that's just amazing. Especially since they're a small startup. It's not like they have thousands of employees.

Marina Lohri: Yes, exactly. And this is also what I likee. They live what they stand for. And I can also really stand behind it and know the patients always come first. This is so important to me. And knowing what is now behind it. I mean, now as a patient seeing how much time it takes to get such a product on the market. It's such an eye opening experience in both ways, so it's really amazing. 

Anna Jaworski: It gives you a new appreciation for all the devices that have come before this one, right? That they had to go through so much research and then it's not just research, it's developing a product and then how do you market that product so that you don't lose your shirt?

Mariana Lohri: Yeah, and Just getting the study done, it's so amazing to see all of that and all the hard work our team puts into it. We have a great team in the U. S. doing a lot of study work. It's just amazing to be part of such a team.

Anna Jaworski: Right. How do you feel that your personal experience with having a congenital heart defect influences your work at atHeart Medical?

Marina Lohri: My work holds a very special significance for me now. Sometimes it even blends in my professional and my personal life.

Marina Lohri: It is particularly meaningful to work for a company that I know may help others people affected by CHD. I have always been very open about my condition, but here I don't have to feel different or explain too much because they understand. I think my CHD also helps me to understand other things differently and grasp another connection.

Marina Lohri: Because I also had the ablation done, which is done by catheter, you get a different kind of understanding for the whole product and everything.

Anna Jaworski: Absolutely.

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.

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.” 

Segment 3

Anna Jaworski: Marina, what advice would you give to other congenital heart patients who are interested in working in the medical field, but don't want to become a nurse or a doctor? 

Marina Lohri: I think the most important thing is to not be afraid and explore new opportunities. If you're unsure where to start, sometimes it's good to consider asking a doctor, a nurse or any other healthcare professionals. Or there might also be openings in local charities or other areas that you're not even aware of.

Marina Lohri: So, I think if you're open enough and talk to your colleagues or peers that have CHDs, that can definitely help you find something you like. And for me, the most important thing that I always do--trust your gut feeling, listen to your heart, then you will always find the path which is right for you.

Marina Lohri: I think it's important to believe in yourself, in your ability to achieve your dream. And if you want to work in such an industry, I'm sure there's always a way somehow to find it I think your personal experience as a patient can be incredibly valuable for a company or a healthcare organization, because sometimes they just see it from one point of view and then it's often good to also see the patient point of view, which is sometimes completely different.

Anna Jaworski: Absolutely. I think there are so many other jobs where you can still be part of the medical profession, but you don't have to be a doctor or a nurse and help as an executive assistant. It's a totally different skill set, but it's just as valuable. They need people who can help them maintain their schedules, set up their travel. I don't know all the different things that you do, but I imagine those might be some of the things that you have to do.

Marina Lohri: Yeah, an executive assistant, that's also, part of it, but now I'm also part of the HR role as well. So, I'm the go to person for our Swiss employees. If there are any HR-related questions or office management being in touch with our facility management.

Marina Lohri: In a startup company, there are many, different hats that I wear. So it's not just a system, it's really many different options where I can explore and learn a lot every day. So, it's great. It helps me develop my skills as well.

Anna Jaworski: Oh, I'm sure things are always changing, right? That's one of the beautiful things about keeping your mind active is you are always learning new things and finding new ways that you can improve the way you do your job, work smarter, not harder. I love it that you're so open to new things. Now you're doing HR. You’re probably doing things you never thought you would do.

Marina Lohri: [00: 26:52] Exactly. That's what I love about it.

Marina Lohri: That you learn so many new things and that you also have the trust from the management that you can really do those things. This is the great thing in this job. 

Anna Jaworski: Right, right. To have that trust. And that's a nice thing about working for a small company is you get to know a number of the executives.

Anna Jaworski: They know you by name. You're not just somebody who they sign a paycheck to. You're a real person and they know and value what it is you say and the work that you do. That's amazing. So where do you see yourself in five years, Marina?

Marina Lohri: [00:27:26] Hopefully I will still be connected to the CHD community through my work. In my current job, I've learned how important it is to have this deeper sense of purpose for an everyday job. And I love this job really with all my heart, even if I only have half of it as we say with Fontan sometimes. I see I have many opportunities for growth and every day brings new challenges.

Marina Lohri: I hope in five years’ time to be able to proudly say that I worked for the company that brought the first reabsorbable AST occluder to patients and maybe even to welcome some of them in Baar. So that will be a very rewarding situation for the company to be in.

Anna Jaworski: Yeah. Yeah. So, you're becoming a spokesperson for the company.

Anna Jaworski: I love that. That's so wonderful. And the fact that you see yourself long term with this company. It's not just a steppingstone for you, but you actually want to be part of the success of this company.

Marina Lohri: I think that's also what makes this company special. I think everyone is very passionate about it. Everyone wants to make this a success.

Anna Jaworski: Marina, can you please share with me the most valuable lesson you've learned in living with and helping others with congenital heart conditions?

Marina Lohri: I think my CHD has often helped me accept things I cannot change myself. It's not always easy but being open about my struggles and my health issues, talking with friends and families for myself is very beneficial. I always try to see the positive side of things, but there are also times when life can be very hard. For example, this year I had a massive hearing loss, and I still don't hear anything on one side. Two years ago, when we learned that we're not going to have kids of our own and both of these things are not at all related to my CHD, but my CHD helped me accept those things, struggling with it, yes, but the CHD really helps me.

Anna Jaworski: I think it's very sensitive of you to recognize that having a chronic condition yourself, which a congenital heart defect is, helps you be more compassionate and sensitive to others. I can see where that would be the case. I think that's also the case for me as a mom. Vicariously, I have experienced having a CHD through my daughter.

Anna Jaworski: I don't have it, but I understand by watching her grow up with that, what it has been like for her. And it has also made me more sensitive to anybody who has a chronic condition. I'm concerned now that you told me about this hearing loss. Do you feel okay with sharing with us what happened with your hearing loss and how you're doing?

Marina Lohri: [00:30:14] It happened in January. I had a massive hearing loss on one side. It just happened out of the blue. The doctors don't really know why it is. It's not CHD-related. That's at least what they told me. I was hoping it comes back. Unfortunately, it did not come back. So, I'm still on one side and nearly don't hear anything.

Marina Lohri: But I just learned to live with it. I cannot change it. So, I'll just make the best out of it. I have hearing aids now. Thankfully, my husband is selling them. So, I've got the person to go to at home.

Anna Jaworski: That's amazing.

Marina Lohri: I have a good advocate for that at home. And it's okay sometimes to feel down and to, you know, indulge in like self-pity for a while, but in the end, it's really important to pull yourself out of it.

Marina Lohri: And just making sure that you see the positive side of things

Anna Jaworski: Positive attitude goes so far. Absolutely. Like you said, right now, you can't fix the problem, except, you did get hearing aids. I imagine you'd have the kind of hearing aid where the sound goes into that one hearing aid and it travels to the other ear that hears better.

Marina Lohri: Um, I only have one on the left side. I only have a hearing aid there. And it really helps me for the orientation actually, because my biggest problem was not to hear anything on the left side, like if there was a sound on the left side, I always turn to the right because I only hear it on the right side.

Marina Lohri: So, now with the hearing aid, I can realize, 'Oh, the sound is coming from the left side.' At the moment I have a hearing aid, which is only on the left side, but I'm still in the testing process. So maybe I'll test something else as well. We'll see.

Anna Jaworski: All right. Well, it sounds like your husbands in the right field to help you out.

Anna Jaworski: Definitely.

Anna Jaworski: That's amazing. Do you mind if I back up really quick? I know we're close to the end of our time together, but you did say that you and your husband decided not to have children and you said that wasn't related to your congenital heart defect. Did you just decide, like so many couples today, that maybe because you want to travel or live the kind of lifestyle you have that you've decided children are not going to be part of your future?

Marina Lohri: Yeah, I think it was not really decided to go traveling. For me, it was more like: I had two doctors, two completely different opinions. And for us, it was like, okay, we'll just try and we'll see if it happens. And I always said, "If it happens naturally, it is meant to be, and then everything will be okay.

Marina Lohri: We will not have any issues with my heart or anything. And if it's not going to happen naturally, then it may be better not to proceed." There are many different ways nowadays that you can still try to get pregnant. But for me, it was just clear from the beginning either it happens naturally or not at all.

Marina Lohri: I feel actually lucky enough that I never even became pregnant, to be honest, because I think losing a baby once you're pregnant is a lot harder than not becoming pregnant at all. It was a hard time during those years, but now we're really fine with it, and we travel. We have our careers. We're just happy where we are. And especially with having more AFibs in the past, I feel like I need more time for myself to rest. I know how much work a child can be. I see it with my friends and I'm so happy I can spend time with my nephew, my niece, or my godson.

Marina Lohri: But in the end, I'm happy when I also can go home and relax and have time on my own, which you know, with your own kids, you don't have it.

Anna Jaworski: It's a lot different. That's for sure. And then when your kids grow up, you're still a mom.

Marina Lohri: Exactly. 

Anna Jaworski: [00:33:46] And hopefully, hopefully your children still want you in their lives, even when they are adults and I'm very blessed that way. I can't believe it's time to conclude the show already. This has just been so much fun. Thank you so much for coming on the program today, Marina.

Marina Lohri: Yeah, thank you for having me on the show.

Anna Jaworski: It's been amazing. That does conclude today's episode of "Heart to Heart with Anna." Thanks for listening today. Please leave a review of our podcast on whatever platform you use to listen to the program.

Anna Jaworski: This helps other people with congenital heart defects know about the podcast. So have a great week, my friends. And remember, 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.