What You’ll Learn

A young woman diagnosed with congenital heart disease as a child shares her journey transitioning into adulthood while managing health concerns. Her insights underscore the importance of supporting young adults take control of their health as they learn to live on their own, build a career, and prepare for marriage and life ahead. 

VIVO: When is the last time you were inspired to change something about your health and what caused that?

Interviewee: One of the most recent times I was inspired to change something about my health is related to my ‘IBS’. I put that in air quotes because I feel like I may not have IBS and probably have something more wrong with my stomach, but they couldn’t figure it out. I had indicators towards Crohn’s and colitis, but they couldn’t determine what it was, so they said I have IBS. Last summer, 2023, I was having a severe stomach ache when my boyfriend and I were supposed to go to dinner at a family friend’s house. I was having a horrific flare up with excruciating pain, constantly going to the bathroom but also feeling like I couldn’t go. My stomach was hurting so much and I didn’t know what was going on. So I started working with a nutritionist, and I’m still working with her.

VIVO: How is that experience going?

Interviewee: It’s going really well. I’ve been able to take more control of my body and really take ownership of what I’m eating and putting into my body. I’m learning how to improve my meals, which is especially important since I’m vegetarian. Working with a nutritionist has also improved my stomach pain.

VIVO: What is the best experience you’ve had with healthcare and how it made you feel?

Interviewee: I would say it’s since I’ve discovered acupuncture. I used to get that done through my health insurance. My current insurance doesn’t cover it, but before I turned 26, I was on my mom’s health insurance, which was amazing. Her insurance covered acupuncture, so I would go for that and medical massage. I really formed a connection with the acupuncturist. Even though my current insurance doesn’t cover it, I still go see her and pay cash. Working with the acupuncturist helps for my stomach, scar tissue from surgeries, headaches, TMJ, anxiety, grief ‚Äì any sort of emotion. When you find a healthcare provider that makes you feel comfortable and understood, that really improves your experience.

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

Interviewee: I don’t even have to think about that. I was studying abroad in Russia back in 2019. To get the visa I needed, I had to get some health testing done, including an HIV test. I didn’t have a primary care doctor because I had to stop going to my pediatrician once I turned 21. I went to where my parents go to get my testing done, and the doctor’s office called me saying, “We need to talk to you about your blood results.” I asked if they could tell me over the phone, but they insisted I come in right away.

I was really nervous and called my mom, who left work to go to the appointment with me. One of the doctors sat us down and asked why I got this test done, if I thought I had HIV. I explained it was for my visa for study abroad. He said, “You’re HIV positive and I’m going to need you to go to the hospital up the road for additional testing.” It was a false positive ‚Äì I’m HIV negative ‚Äì but the way he handled that was horrible. The doctor is lucky I didn’t sue for malpractice.

VIVO: How did that make you feel when you realized you didn’t have it but it had been a false positive?

Interviewee: I felt the doctor went about it in a terrible way. He could have said, “Your test indicated you may be positive for HIV, but sometimes it comes up positive if you have immune system conditions,” which I do, and that’s why it triggered the false positive. I have a primary immunodeficiency disease, but he could have asked more about that to figure out why I potentially got a false positive.

VIVO: What do you think healthcare will look like in 10 years?

Interviewee: I see healthcare moving toward a more monetary-driven situation. Healthcare is all about making money and insurance companies paying out as little as possible, while providers go out of network because they get paid much more. I see more urgent cares popping up ‚Äì if you’re familiar with City MD, I consider them the McDonald’s of healthcare because they really get you in and out quickly. I worry about the current state of healthcare.

VIVO: What is your worry about that?

Interviewee: Everything is so expensive. I used to be on my mom’s health insurance, and when I turned 26 in November 2023, I got booted off. I switched to my employer’s insurance, and even though it was still UnitedHealthcare, they covered a lot less than my mom’s insurance. I had a ridiculously high deductible with employer-sponsored coverage, and it felt like they didn’t cover anything. Now I’m on my boyfriend’s health insurance because it’s cheaper for us. My insurance coverage at my job was horrible. I find my boyfriend’s plan covers more, but it’s still expensive to go to the doctor. I went this week and had a $45 co-pay, whereas on my mom’s health insurance, I would have a $20 co-pay.

VIVO: What do you think needs to be said in the healthcare space that isn’t being said that could potentially fix that or another issue?

Interviewee: Some of my friends were laid off this year, and instead of going on COBRA because it’s so expensive, they would rather not have insurance temporarily until finding new jobs. My sister was technically self-employed, so she would have to do COBRA. Because of her income level, COBRA was $1,100 a month, which is insane. She wanted to go on her fianc√©’s insurance, but because he worked for a Catholic company, they didn’t recognize domestic partnership. They had to get legally married before their wedding that they’re having this year so she could go on his health insurance. That’s ridiculous.

Even with me being on my boyfriend’s health insurance because my coverage was horrible and expensive ‚Äì our family plan for both of us is cheaper than my individual plan at my employer. But to go on his plan, we had to go to New York City County Clerk and fill out domestic partnership paperwork, which is ridiculous.

VIVO: Let’s dive a little bit more into your specific heart condition. Can you go back to that moment in high school when you were diagnosed, and share what your doctor said to you and your immediate thoughts and feelings?

Interviewee: I was having a lot of heart palpitations and heart fluttering in high school ‚Äì weird feelings. I always felt like my heartbeat was off, and I would get a lot of heart palpitations. I wasn’t feeling well, so my mom took me to a pediatric cardiologist. I remember doing a lot of testing that day ‚Äì echocardiogram and other exams where they put gel all over me. That day they told me I had mitral valve prolapse, or MVP. In a more recent appointment in my 20s, they told me that two of my heart valves were leaky. With the MVP, they told me I can live a normal life, but I need to be careful about dental infections, for example, because they could go straight to my heart.

VIVO: What was your response to the MVP diagnosis?

Interviewee: I was a little scared because I was a teenager thinking, “Wow, I am diagnosed with a heart condition that I’m going to have for the rest of my life.” But my mom told me one of my aunts has the same condition, and I see that she’s able to live a normal life too. So I thought it’s something in the background but I need to be cautious about.

VIVO: Did that diagnosis change how you viewed or understood yourself at the time?

Interviewee: It decreased my confidence because I’m worried to run or even to get my heart rate up. I’m scared to get heart palpitations because I’m concerned something might be wrong.

VIVO: What about your perception of yourself? Did that shift at all?

Interviewee: It gives me a negative self-image associated with that decrease in my self-confidence.

VIVO: Did you have access to information about your condition beyond your aunt having it as well?

Interviewee: They did not give me any brochures. Because I was diagnosed as a minor, I felt like more of the discussion was with my mom as opposed to me. It was more the doctor speaking to my mom about my condition and how to care for me or how it would impact me.

VIVO: Was she able to help you from then on introduce changes that needed to happen?

Interviewee: Yes, my mom was able to educate me, or I would look online.

VIVO: Compared to how you viewed your health and overall wellbeing then, how do you view it now?

Interviewee: I feel more in control of my health now because I’m able to choose my doctors. Some of the doctors I experienced in the past, I did not like the doctor who misdiagnosed me. I feel like I’m able to choose my doctors, work out often, work with a trainer, work with a nutritionist, see acupuncturists, and make healthy meals. So I feel more in control of my health.

VIVO : How has your self-image or self-perception changed given this newfound control over your health?

Interviewee: It makes me feel a lot better about myself. Lately, I’ve been in my self-growth era because I’ve been taking my CPA exams ‚Äì I have one tomorrow, which I’m very excited about. Ever since I started working with the nutritionist, I’ve really taken control and ownership of my own body, and it makes me feel good to be doing things for myself.

VIVO: Have you noticed any changes in how you view your strengths or weaknesses as time has progressed?

Interviewee: I’ve always been very hard on myself, but now I’m able to not beat myself up over things. You can’t really dwell on any shortcomings or things that may happen. It is what it is, and there are going to be ebbs and flows. You can’t let that get you down and trap you into a dark place.

VIVO: Tell me a little bit about how you structure day-to-day life around your heart condition.

Interviewee: I try to be active every day because it’s good to get my blood flowing. I work remotely, so getting out of the house is important. I start my day by walking my boyfriend to the subway. I’ll walk him to the train and then walk back home. Sometimes I get a coffee ‚Äì I got one today. The coffee gives me anxiety and makes my heart palpitations worse, so I have to limit it, but I do love coffee.

Then I’ll start my work day, cook lunch ‚Äì something healthy or maybe leftover dinner from the night before. After work, I’ll either go to the gym or study for my CPA exams. I’m trying to exercise, eat healthy, and also manage my work and stress.

VIVO: What about any medications that you have to introduce in your daily routine?

Interviewee: I don’t really take medications. Even though the heart condition probably heightens the anxiety I already have, I wouldn’t want to take medication because it would make me feel like a shell of myself.

VIVO: Did you used to take medication and experience that shell-of-yourself feeling?

Interviewee: Not for anxiety but I used to take stomach medication like Linzess, and it made me extremely sick. Sometimes I feel like the medication side effects are worse than the condition, but I’ll take antibiotics if I need to or supplements.

VIVO: I know you mentioned coffee can make the anxiety worse. How often would you say you have coffee?

Interviewee: At least once a week. When I go into the office, I constantly have coffee every time, but I try not to because it makes my anxiety worse, which makes my heart feel weird and fluttered.

VIVO: Do you have to do anything to get your heart to regulate back?

Interviewee: I’ll try to relax and calm myself down, maybe even breathing or doing a face mask, going for a walk ‚Äì something to help me relax.

VIVO: Are there any habits that you’ve had to give up completely?

Interviewee: I don’t think I’ve had to completely give anything up, thankfully, although I do need to be careful about running and things that increase my heart rate.

VIVO: How difficult would you say it is to keep up with your day-to-day routine and managing this heart condition?

Interviewee: It’s difficult managing the heart condition along with my immune system condition. Having immune, heart, and stomach conditions together is challenging. I need to be worried about getting sick or getting infections because with my immune system condition, I’m more prone to sickness and it gets really bad. With certain infections, they could spread to my heart and become a severe problem with my heart condition.

VIVO: Do you find that it has any impact on your social activities or social life?

Interviewee: I still hang out with my friends and go out, but I don’t like places that are extremely populated, especially during cold and flu season. I’m okay at a bar if I’m sitting at a table with my group, but for a club, rave, or concert, I’m worried about the types of sicknesses people might spread. My boyfriend works in the office every day, so we’re always getting sick because he brings illnesses home from work or from the subway.

VIVO: Do you feel like these modifications have any impact on your relationships?

Interviewee: Not now because I feel like I’ve returned to my pre-COVID activities, although there are some settings where I get nervous, as I mentioned. Sometimes my boyfriend might get upset if we’re approaching the holidays and he wants to go to a concert, and I say I don’t think it’s a good idea because we might get COVID or flu and ruin our holidays. Sometimes he doesn’t understand, but for the most part, I don’t really deal with that issue.

VIVO: Do you feel comfortable talking about your diagnosis with friends and family, or is that something you keep to yourself?

Interviewee: I keep it to myself because I don’t want people to think, “Oh, she has heart disease. I am concerned about her.” When you hear “heart disease,” you might think something really scary. For example, one of my family friends had a heart transplant in 2023. My dad flew to California and lived with his friend for a month as his caretaker. When you hear someone has heart disease, you think of a situation like that ‚Äì you think the worst.

VIVO: Do you think your gender plays any role in how you respond to the disease or how you navigate social situations?

Interviewee: When you brought up gender, it made me think that birth control pills caused me to have more heart palpitations than without them, so I couldn’t be on birth control pills and had to switch to alternative methods.

VIVO : How long did it take to connect the dots between the increased heart palpitations and the birth control?

Interviewee: Pretty much immediately. I went on birth control as a teenager shortly after my diagnosis, and I noticed that after starting the pills, my heart palpitations were getting more frequent and worse. I learned that the pill I was on can increase heart palpitations, so I stopped taking it. I stopped birth control for a while, but now I have an IUD.

VIVO: Did you consider trying other birth control pills, or did you just say all of them can lead to increased heart palpitations?

Interviewee: I figured all of them could cause increased heart palpitations. I was concerned, and I was really young too, so I didn’t quite need to be on it. Yes, I was getting really painful periods, but I would rather deal with that and switch to a different type of birth control when I felt like I 100% needed it.

VIVOt: Let’s talk about the impact on mental health that living with a heart disease can have. How do you cope with the emotional and physical challenges?

Interviewee: For physical challenges, I need to limit my strenuous activity because I don’t want to get my heart racing too much and cause it to flutter, have complications, or make weird sounds. Emotionally, I’m more prone to anxiety, so I need to do things for myself to manage it ‚Äì self-care like playing relaxing music, cooking, taking a walk, or doing skincare.

VIVO: I know physical exercise is a common stress management practice. Do you feel like the calming routines help you cope equally?

Interviewee: During tax season, when we work 80 hours a week, the one thing that gets me through is going to the gym every day or every other day. The workout really helps with stress and anxiety. Self-care at home helps, but not as much. Maybe doing yoga or a face mask with relaxing music – I have to do multiple things together.

VIVO: What types of gym workouts do you like to do that help manage stress?

Interviewee: I like to go on the elliptical to start, and then do different types of strength training – squatting, bench pressing, lifting. I do a bit of everything.

VIVO: Do you use any devices like heart rate monitors or watches that help you manage that?

Interviewee: Yes, I like to wear a smart watch when I workout.

VIVO: What type of support do you have? Do you have any support groups that help you cope?

Interviewee: I don’t use support groups, but I would talk to my therapist. I stopped seeing my therapist because my new insurance isn’t in-network with him. Now I either need to find a new one or cope in a different way. My therapist was a big support system for the anxiety I get around everything ‚Äì my job, my health, or general life situations.

VIVO: Are you currently seeing a cardiologist or PCP to talk about MVP at any regular interval?

Interviewee: I don’t have a PCP because I really don’t like going to them after that experience where I was wrongfully diagnosed with HIV. I also felt it wasn’t really necessary because anytime I might see them for any issue, they would say, “Oh, you should go to the ENT” or “You should go to the allergist.” There’s not much they can do other than diagnose me or treat me when I’m sick. But I do go to the cardiologist every year.

VIVO: What has that experience been like and how do you feel they support you?

Interviewee: It’s been okay, but I want to find a different cardiologist because I haven’t found one in New York City yet ‚Äì I still go to Long Island. I want to find one closer that I could feel more connected with.

VIVO: Being in such an urban area like New York City, what unique challenges do you experience that someone in a rural or small town might not face in accessing healthcare?

Interviewee: When I’m sick, I can’t drive to the doctor’s office ‚Äì I have to walk when I’m extremely sick. I remember having the flu and walking to the doctor, or waking up at 2:00 AM with kidney stones and instead of my boyfriend driving me to the hospital, we called an Uber. I wasn’t going to call an ambulance. So having to take Ubers or walk to appointments when you’re sick instead of being able to drive is challenging.

Another issue is the subway. Instead of taking five minutes, it might be delayed. I had to take the subway yesterday and it was canceled for over an hour because someone was struck by a train. You pay for the subway and then end up having to pay for an Uber anyway. It’s really frustrating and happens a lot.

VIVO: Does that add to the anxiety or stress of going to the doctor?

Interviewee: Yes, and not the doctor, but anywhere. I know when I go somewhere using public transit, I need to leave earlier because the subway might be unpredictable. This morning, I had to meet with a client and when I got to the station, both trains were delayed. When I see the word “delay,” I think I should probably get an Uber. Sometimes I might walk to the subway station and see red caution tape at the stairs, meaning the subway isn’t running that day. Now I have to spend money on an Uber, which happened this weekend.

VIVO: How do you envision your future and what role does having a heart condition play in that?

Interviewee: I envision living a normal life as I have been, but I worry that my heart condition might get worse as I get older or that I might develop other conditions.

VIVO: Does that prevent you from planning for the future or do you plan forward anyway?

Interviewee: I plan forward anyway because I can’t let my medical conditions stop me.

VIVO: What are some of your goals for the next few years?

Interviewee: I plan to finish my CPA exams in January or February of 2025. After that, I’m probably going to get another certification. With the CPA and other certification, I’ll be looking for different jobs. I want to advance in my career. I’m probably going to get engaged very soon, within the next year. We want to buy a home ‚Äì we don’t want to live in New York City forever or raise our family here. That’s a goal for us, to be saving for a home.

VIVO: What advice would you give someone who was recently diagnosed with congenital heart disease?

Interviewee:¬†It depends on the type of congenital heart disease. If they were diagnosed with MVP like me, I would say you can live a very normal life, but you need to be careful and do things in moderation. If they were diagnosed with something like congestive heart failure where you need a heart transplant, that’s very scary. But I’ve seen the recovery and impact it made on my family friend, and it’s remarkable what modern medicine can do.

Participant Profile:

• Female patient with mitral valve prolapse (MVP) and leaky heart valves
• Lives in New York City
• 26 years old, diagnosed at age 15-16
• Also manages primary immunodeficiency disease and IBS
• Works in accounting, currently studying for CPA exams
• Plant-based (vegetarian) diet
• Notable challenges: Managing multiple health conditions simultaneously, insurance coverage issues
• Key priorities: Career advancement, maintaining health through nutrition and exercise, saving for a home