What You’ll Learn

A 30-year-old woman with a congenital heart condition and open heart surgery as an infant is diagnosed as a young adult with pulmonary hypertension. She shares her perspective on negative experiences cardiology care versus positive experiences with her primary care doctor with whom she feels a connection.

Interviewee: I live in New Jersey, moved here about three years ago, but I’m originally from New York. My congenital heart disease is pulmonary hypertension. It’s mixed with a lot of other stuff that I can’t pronounce, but it started when I was younger, about one year old, had surgery, an open-heart surgery to correct the hole in my heart. When I was around 18, which was 12 years ago, because I’m now 30 or maybe 16 or 18, I can’t remember. I think it was 18. I got diagnosed with pulmonary hypertension, and that’s a result from the open heart surgery and from when I was younger. I know it’s something called tax or something. I really can’t pronounce it, but it’s not an extra thing.

I know for sure I have pulmonary hypertension, but I know there’s something that’s not repaired in my heart as well from when I was younger. But there was a reason that the surgeon left it. From what I can understand, there’s a reason that the surgeon left my heart the way that they did. They didn’t completely repair it, because in the long run, it will affect me. But now, for sure, I have pulmonary hypertension and I follow up with a cardiologist about every three to four months.

VIVO: What’s the best experience you’ve ever had in healthcare? And how did it make you feel?

Interviewee: I don’t think I really had any great experiences in healthcare, unfortunately. I’m nervous or scared to go to doctors because I didn’t really have a great experience with my cardiologists. I can’t really share any great experiences with cardiologists, I don’t have anything positive to say.

VIVO: Has there been any healthcare experience you had that was good? Or, what made it stand out as not bad at least?

Interviewee: I would say my regular PCP, they’re attentive, they’re nice, they’re relatable. Or even if I go to the GYN, they’re knowledgeable, they try to walk you through, if you have an issue, they try to walk you through it from the beginning to the end and clearly explain why it’s happening, not just tell you that you have it and figure everything out on yourself.

VIVO: How does that make you feel when they are more relatable and they’ll walk you through it?

Interviewee: It makes me feel good because it makes me feel like they actually care about me and my questions.

VIVO: What is the worst experience you’ve had with healthcare and how did it make you feel?

Interviewee: Not listening to what I have to say. So for my cardiologist, there were a lot of side effects that I had with the medications that she would give me. It wasn’t any type of compassion. It was like, “you do this and if it doesn’t work, then oh, well,” in a sense. That would definitely be my worst health experience.

VIVO: What about the last time you were inspired to change something about your health? It can be related to your heart disease or it can be completely separate, but what was the most recent time you were inspired to change something about your health?

Interviewee: I would say eating healthy, not eating out so much, or eating frozen meals because I’m used to eating Trader Joe’s frozen meals every day, but that’s not always healthy for you. So making fresh meals maybe a few times a week since I do work from home so it’s a little bit easier.

VIVO: What inspired that change?

Interviewee: My family. I didn’t really know that it was not too good to eat all those frozen meals, and it didn’t really leave an impact on my body or anything. But I think that’s one I would say.

VIVO: What do you think is not being said in the healthcare world that needs to be said?

Interviewee: Can you give me an example? Because I’m not really too sure.

VIVO: It is very broad question. It can be as specific or as general as anything that you think is missing from communication and healthcare.

Interviewee: I would say a lot of people have really bad cramps during menstrual cycles, so they get really sick. Some people would say, you need a day off of work or something like that, or that should be standard.

VIVO: You think that there should be time off offered to women during their menstrual cycles?

Interviewee: I would say yeah. Before I used to get really, really sick because I used to throw up and stuff like that, so it would ruin my whole day or I’d be lightheaded or dizzy or I’ll have really, really bad cramps. I would say because a lot of women, maybe 90% of women have that issue.

VIVO: And then final question within this exploratory, what do you think healthcare will look like in 10 years?

Interviewee: I think it’s advancing and I think that we’re probably getting more doctors or younger doctors or doctors that become doctors because of issues that they might have. Let’s say a woman might become a GYN because she’s having a lot of issues with that. So that will also help in the future. But I think it’s only going to advance and I think we are finding more and more resources that eventually lead us to a better future.

VIVO: Can you take me back to the day, you said you were either 16 or 18, when you learned about this diagnosis, and the feelings that you had then?

Interviewee: I think it was 16 because my dad took me out. I couldn’t go by myself. So I think at 18 you could, so 16 for sure. It was 2008. I feel like I knew that something was wrong with me. So I would tell my dad I was short of breath at school when I was doing activities. Even at gym and stuff like that, I was really short of breath, so I knew something was wrong with me, so it wasn’t a surprise when I did go. When I did go, it was nerve wracking, I was very sad because she mentioned a lot of things that I couldn’t do.

I couldn’t play sports. I couldn’t really even do yoga. I mean, that was the thing that she would allow, only yoga, which is a very simple activity, but for sure, I couldn’t do basketball. I couldn’t do soccer. I couldn’t do no running because I would get shortness of breath with anything and then I can pass out and I really wouldn’t be good. But at that time, I was very sad. And it also came with a lot of other problems. Eventually, when it was time to talk about having kids, which I don’t want to have kids, but that was clearly a no. So over the years, it came with more and more repercussions or more things that definitely can happen in the future.

VIVO: You had to stop doing those activities?

Interviewee: Yeah. I was participating in those activities and I noticed it would be like, I think I went for a hike one time with my high school. I went to a hike one time with my high school, and I couldn’t even make it up the hike. It really was terrible. I was having shortness of breath. I needed water and stuff like that. So that’s when I knew something is wrong. I couldn’t make it past a long period time, and I was definitely the only one.

VIVO: And did you have at that time access to information about your condition and how to handle it?

Interviewee: I would say so, but since I was younger, I probably wasn’t as knowledgeable. I probably didn’t really understand. I knew I had something, I knew what I couldn’t do and what I could do, but I didn’t really know much else other than that.

VIVO: And how do you currently view your health and wellbeing?

Interviewee: I look up more things about it. A few years ago, I would join some of the groups with some people that had similar issues with me, and it would be not that many people because it’s a very rare disease, maybe seven to 10 people, but that was a long time ago. I haven’t really joined those in a while, but now I’m more knowledgeable. And then also now I ask cardiologists more questions about the future and what the future looks like.

VIVO: What about your image of yourself? Did your self-image change learning about your condition?

Interviewee: I think since it’s not visible, I don’t feel as bad, but I do have a scar from when I was little that I want to say it bothers me, but I don’t show it off. We don’t show off scars. But I would say that would be the only thing. I think since it’s not visible, so someone can’t see me and say “she looks different.” So that makes me feel better. But the scar does make me feel self-conscious or a little bit insecure because I can’t wear certain shirts or I can’t wear certain bathing suits, but it doesn’t bother me as much because I try to buy stuff that doesn’t show it. And in the winter time, I really wouldn’t get bothered at all. In the summertime when I have to wear stuff. I think I’ve acclimated to buying stuff that doesn’t show my scar.

VIVO: Have you noticed any changes in how you think about your strengths and weaknesses as a person?

Interviewee: No, I wouldn’t think so. Maybe I would say that I wouldn’t even really say I’m more resilient because it’s not really. I can go days without noticing that I have this issue only because I work from home. I don’t have to walk anywhere or run anywhere. Or even if I didn’t work from home, I didn’t really notice it because I would drive to work because I don’t have to take the train or walk up steps. So I really wouldn’t know about that one.

VIVO: You mentioned earlier the realization that you cannot have children. How has that, if at all, influenced how you view yourself?

Interviewee: I think from a very young age, I didn’t want to have children, so it doesn’t bother me at all because I don’t want children. But then sometimes I think even if I do want children, I can’t, but it doesn’t bother me. I think I’m more insecure about the scar. That part doesn’t bother me because I don’t think I ever grew up saying that I wanted to have children.

VIVO: Let’s talk a little bit about your day-to-day life. How do you structure it around your heart condition?

Interviewee: I would say at first when I was on a medication, it did make me feel really sick. That was a little bit harder because my days would start earlier and I also would get very nauseous and very sleepy on a medication. So I would have to do certain things. If I did have to go in the office, I would have to take it really early because I knew if I didn’t take it at a certain time, I’ll probably vomit or be really, really tired or really, really nauseous. But now it doesn’t really play a huge role because I work from home. So I’m able to, if I do feel sick, I’m able to go to the bathroom, or if I do feel nauseous, I’m able to take some type of medication or drink some water. But other than that, even the little things like maybe getting groceries, I’ll order Instacart, for example, because some stuff might be too heavy for me to walk a few minutes with.

Or even going up the stairs, I have stairs in my apartment, that doesn’t really play a role too much. It’s one flight of stairs, maybe 12 or 13 stairs. So it doesn’t really affect me. But I’m trying to think of the day-to-day stuff that I do that might affect me. But I think I’ve acclimated a little bit. I have a car, so I don’t have to walk far. Even when I park my car, it’s probably a 30-second walk, if that.

I would say I don’t leave my house as much. I probably don’t leave my house every day, maybe a few times a week because I work from home and then I order groceries most of the time, so I’m about to leave my house during the weekends. But I did definitely pick it because I wouldn’t be able to go up a huge amount of stairs every day. Let’s say if it was a regular apartment building with five flights, I definitely wouldn’t be able to do that every day. I wouldn’t probably even go outside, I would be very anxious to go up the stairs, go down the stairs and stuff like that.

VIVO: What about other habits? Maybe what you eat, if and when and how you exercise, medication, sleep, did any of that, do you have to create structure around any of that?

Interviewee: I think I eat regular stuff. I don’t really have a restriction. Maybe because I’m a little bit smaller in weight, so I do have to eat for sure. I don’t really have many restrictions. I try to eat stuff that doesn’t have so much processed because that’s not good for you in general.

Exercise, I don’t exercise at all. The most I’ll do is yoga in my house, which is led by me. So I can go by my own pace. And it’s fine with the cardiologist. I could take walks around my neighborhood, but I decide not to. I’m lazy and I’m tired after work, so I don’t do that.

VIVO: Have you had to give up any habits? For instance, smoking, drinking, going out at night, things like that? Anything you can think of that you had to give up?

Interviewee: I would say when I was younger, maybe sports, basketball. Did I have to give up anything? No, really, I really still do the same thing. I know even with catching flights, a flight maybe less than a month ago, and I was having really bad chest pains, which was weird. But when I spoke to my doctor before they said it’s because of the high altitude, but I take flights often. I think I took probably maybe seven this year, and this is the first time that it happened. Or hot showers, they say you can’t take hot showers because it’s harder to breathe, but I still take hot showers. Or it’s harder to breathe and then when you get out, you’re going to be really lightheaded. But I still do that. I don’t take very, very hot showers to the point I’m about to pass out. I really can’t think of anything.

VIVO: Is it difficult to keep up with any of the routines you have established?

Interviewee: No, but I would say sometimes it’s difficult because maybe I don’t have the same energy as other people to clean my house and I bend down and go throw out the garbage. I have to go outside to throw out the garbage. So I would say little stuff like that. I might not have the energy to clean my whole house in a day. I have to spread it out and stuff like that.

VIVO: How does your health affect your social life and ability to go see friends, go see family, things like that?

Interviewee: I don’t think it really does. I think only my family know about my health condition, my heart condition. I don’t really discuss it among my friends.

VIVO: Why is that?

Interviewee: I’m a very private person, so I don’t really discuss anything unless they’ll ask. I don’t like to speak about my personal business. I mean, it might be a little bit that I’m a little bit self-conscious about it, but I don’t like to speak about it. I don’t want people to be worried about me and stuff like that. I think that the people that should know, which is my family, they do know. And if anything ever happens to me, then my friends should be okay with that because they know the type of person I am.

VIVO: And I’m curious, thinking about from a work perspective, is this something you disclose to your employer?

Interviewee: I don’t. I think only because you can’t really tell by looking at me. So it’s not really much to tell them. Unless I have questions about the health insurance and what it covers and stuff like that. But I’m able to do my work. I work in clinical research. It’s mostly stuff on a laptop. It’s not like I have to pick up anything or go for a walk or go pick up stuff, or if I work in a lab or something. That probably wouldn’t even affect me as well. I used to work in retail and that still didn’t really affect me. I had to walk around, but it wasn’t like I was running or doing anything very strenuous.

VIVO: Not super strenuous. What role do you think gender plays in social situations in relation to your health?

Interviewee: What do you mean by that?

VIVO: I’m curious if being a female with a heart condition is any different than being a male with a heart condition. So I’m curious what your experience in social situations is, if there’s any distinct stories or experiences you’ve had.

Interviewee: I don’t think so. I think maybe if I was a male though, people would expect more out of me. Maybe let’s say, for example, if I’m moving, my family knows I can’t pick up 10,000 boxes and help you, or if I do, I’m going to have to take breaks and get some water. But if I was a male, I would be expected to do all those things without taking breaks and drinking water. But I would say only because my family knows, and then I probably don’t do those type of activities with my friends, and if they do, it doesn’t seem out the norm because I’m a woman.

VIVO: It’s almost an assumed support that you received because you’re a woman?

Interviewee: Yeah. If I was a male they would probably think different. “Why is she taking so long to lift this box?” Or something like that. But I don’t think that I even take long to do things. So people don’t really assume, hey, something’s wrong with her. She has a heart condition.

VIVO: Has having a heart condition impacted any relationships, whether it’s friends, family, romantic, has having a heart condition had a direct impact on any of those relationships?

Interviewee: I wouldn’t say a direct impact. I don’t disclose it. I don’t disclose it at all until I know I am serious with a person. I would say maybe if the person wants kids, to me it doesn’t play an effect because it doesn’t play a role, because I never wanted kids even before I knew that I had this condition. So it’s not like I don’t want kids to have this condition, it is because I don’t want kids or it’s not like I can’t have kids because I have this condition, but it’s like I don’t want kids. So that’s my main focus. I don’t want kids, even if I didn’t have this condition, I still wouldn’t want kids.

VIVO: So do you share that upfront in a relationship?

Interviewee: Yeah, I share I don’t want kids. But it has nothing to do with the condition.

VIVO: So I want to continue along with some of the support you told me you received and ask, how do you cope with emotional and physical challenges of living with a congenital heart disease?

Interviewee: I think that my family is pretty much understanding, so I don’t really feel insecure or I don’t really feel not capable of doing stuff. So for instance, I went on a vacation to Europe with my sister, and in Europe, you have to do a lot of walking and through the airport has a lot of walking and stuff. So she knows that I have this condition, so she’ll help me with my bag, she’ll help me with my suitcase. She asked me if I need water. She asked me if I’m okay. But that’s also a great thing to have because I could pass out any moment if I’m walking too many miles or if I didn’t eat or something like that. Or if I’m carrying heavy stuff and I’m running, she knows I can’t do that stuff. So we take our time or she helps me with whatever I need help with.

VIVO: Would you say that you have kept your circle pretty tight, so that talking about your heart condition doesn’t have to be a factor, but you’re around people who know how to support you?

Interviewee: Yeah, definitely. I don’t like talking about it too much. I don’t really like talking about any issue I have, even if it’s at work or if it’s a personal issue or if it’s something about my house or something. I don’t really like to disclose that. I like to keep everything to myself, or people only know if they have to know.

VIVO: That’s good insight. Since you are keeping a lot of that, do you have any strategies for how you handle mental health or how, I think you mentioned you went to a support group for a little while, anything like that that helps you manage that? The thoughts and feelings internally?

Interviewee: I have a therapist, but I don’t really speak about this type of issue because it doesn’t bother me. I don’t know why it doesn’t, but if it does, it’s probably a few times in a year where maybe one time it probably bothered me because I didn’t have a good enough health insurance, so I had to pay thousands of dollars to see a doctor or whatever. But then my sister helped me with the money. But other than that, it doesn’t really bother me about the condition, but that’s because I make my life such as it doesn’t bother me.

I can be doing, for example, if I go on a group trip with my friends, I’m pretty sure that it will bother me more because I don’t have the support that I have, let’s say, or that they don’t know that this person, I can’t drag my suitcase fast throughout the airport. But I did go on vacation with my friends one time and it was normal. But that was in 2020, maybe 2019, which was a few years ago. But I think I’m making my life such that I don’t run into any issues about my heart condition. I don’t say, “Hey, let’s go through this marathon.” Or even my friends want to go to Six Flags, I say I don’t want to go.

VIVO: What about when anxiety or stress comes up? How do you manage that?

Interviewee: I would say maybe therapy as well, or taking a nap.

VIVO: I’m curious, from the time you started feeling those symptoms of I’m really short of breath, what’s going on here? It may be more than exercise regularities. How much time passed between that and you going to the doctor and getting diagnosed?

Interviewee: I would say around maybe six months, because at that time it was harder to get appointments. And then also, I was young, so I didn’t really know what was going on. I had to probably really think about, hey, is this really happening? I would say not more than six months, maybe a few months, maybe three months.

VIVO: And were you suspicious that it might be heart related because of the surgery you’d had as a baby?

Interviewee: Yeah, I kind of knew already. I figured it’s something to do with this because I’m not, I don’t want to say I wasn’t normal, but in hindsight, it wasn’t normal compared to other people. I noticed that something was different, and I’m like, it must be the heart condition.

VIVO: And tell me a little bit about now, today, if you were to start feeling like you needed to talk to your doctor or your cardiologist about something or you had a concern, how do you approach those conversations with them?

Interviewee: So I don’t even really have a cardiologist because the one I had, I had a horrible experience with her that I haven’t seen her maybe since April of this year, if that. I don’t even know if I went to go see her this year. I think it was April. I think it was in April 2024 but I told myself that this is the last time that I’m going to see her ever. And that’s the same doctor that diagnosed me, but I didn’t really have a very, I don’t think I was very supported and I think her bedside manner was horrible, especially as a child. And as a grownup I was like, she decided that I could see her after I turned 18. So it was my pediatric cardiologist, but she decided that she couldn’t see me after 18. So she did, but I decided that I never want to see her again in life. I had a horrible experience with her. But to answer that question, I don’t really see a cardiologist. But if I did have any issue, I probably would have to write her or write her nurses and ask them “I’m having this issue.” But I do see, because it also was when I lived in New York, and I live in New Jersey now, so that was kind of far. But if I do have any issue, I would probably reach out to my primary care doctor here in New Jersey.

VIVO: So until April when you stopped seeing her, you were seeing her every three to four months or regularly?

Interviewee: I would say every four months if that, but I didn’t want to see her at all. So I would try to prolong it or try to cancel the appointments. But should have been every four month, but I probably canceled a few.

VIVO: You mentioned it being far to go from New Jersey to New York. I’m curious, are there any other challenges with access to healthcare or appointments or medications that you experienced being in a more urban area?

Interviewee: So also, the appointments were scheduled far in advance, but if I did need to see her, it was a hassle because she was so busy throughout the days and stuff like that. And I noticed in this area, they have more appointments and more accessibilities, the doctors and stuff like that. But let’s say even when I had COVID, I had to call her and I had to go all the way to the hospital to get the medication.

But the hospital wasn’t very on top of things, I would say on top of appointments or even if I had an appointment at eight, I’d probably be out by one. That’s insane. So I’ll take the whole day off for work and stuff like that. So one thing would clash with another. And then I think at the time, I didn’t really have days off that I could take from work. And then by the time I knew I could take the days off, it was less than a week before the appointment, and then it would be hard to take off because you have to tell your employee more than that.

VIVO: Lots of challenges then. I have a couple questions here for you, and then we can wrap up. I’m curious, if you were to sit and try to imagine what the future looks like for you, how do you envision your future in relation to, or how do you envision your future, and what role does your heart condition have in that?

Interviewee: How do I envision my future? I try to take it day by day. I talked to my doctor about life expectancy recently. That was a hard thing, hard because it’s a hard topic to talk about, because for years I didn’t want to know what my life expectancy was until maybe I asked when I was 28 about life expectancy. But she stated that, of course, it’s a disease. She doesn’t really know what the future may hold, but most likely if I do get sick, it’ll be something from the lung, maybe pneumonia or a very, very bad flu. But she said that I can live up to 60, 70. She doesn’t really know at this point, because so many things could happen or so many infections and stuff can occur. But I take things one day at a time, because I never really know what the future holds. But also don’t let my illness or my disease hold me back from doing things that I want to do. So I want to experience life, travel and just say honestly, travel. I think that’s the one thing that I’d really like to do.

VIVO: So do you feel that your heart condition and having that conversation with your doctor, does it prevent you from planning for the future? But you more so take it as it comes?

Interviewee: Yeah. I think in general, I didn’t really plan much for the future, because I never expected to have kids. I never expected to get married. So it’s like, I don’t know, I take everything day by day. But that was since I was younger from even before I got diagnosed, maybe when I was 10. I never really wanted these things. So I think I’m a free spirit. I don’t know if that would be a very suitable characteristic but I think that I never really planned for anything. But it’s not even only because of my heart condition, it is the type of person that I am.

VIVO: And so you said you love to travel. I’m curious, do you have any goals you can share, whether it’s related to travel or something else? Any goals for the next few years?

Interviewee: At my job, I do want to change careers. I want to do something in pharma, but I think that’s maybe in the next two or so, one or two years, I would say more towards regulatory work with that. Traveling, I came back from Europe, so I don’t really know what really, the next place I wanted to do was. I was looking today to go to Tokyo. But other than work and traveling, I don’t