What You’ll Learn

For many patients and providers, digital health is a concept from the future. Not this patient, a healthcare executive who relies on a range of digital health apps and telehealth to manage the diagnosis and treatment of his congenital heart disease. 

Interviewee: I’m based in Chicago, Illinois, and I’m a CFO in my organization, which is a healthcare organization. For about three to four years now, I’ve been working mainly remotely due to my health condition. I’m someone who loves innovative tools that can help me. I make use of a lot of applications, not just for my business, not just for life, but for my health, my heart health, just to make sure I’m keeping up with good shape. I’ve been diagnosed with ASD (atrial septal defect).

VIVO: How old were you when you received that diagnosis?

Interviewee: I first noticed something might have been wrong with me, particularly my heart, during a typical afternoon in summer of 2019. I was walking up the stairs in my home in Chicago when I suddenly felt a strange sensation in my chest followed by shortness of breath. It left me feeling uneasy and I decided it would be best to consult a health professional. After discussing the symptoms with my primary care physician, she recommended I should visit a cardiologist for further evaluation.

My insurance covered specialist visits, so I made an appointment with a cardiologist at a nearby hospital. Upon meeting, I underwent a series of tests including ECG and other scans. These tests revealed that I have ASD, and then I started working through trying to navigate the whole process.

VIVO: Upon receiving that diagnosis, what was your first thought or feeling?

Interviewee: I was thinking, “What is wrong?” I was in the dark. I felt it was a time bomb, waiting for the day to detonate or something. First, I was trying to find out more. I’m someone that makes use of a lot of software tools, so I reached out to a telehealth software solution. Their in-house licensed professional doctors linked me to someone to take care of me.

But the telehealth app didn’t give me the guidance I was looking for or detailed information. So I decided to go with another telehealth app, the American Well app, or Amwell. That provided me with access to experienced cardiologists who specialize in ASD. From then on, it was all good. I was comfortable because I got to know more, got a lot of resources to learn about what was going on, and I started believing that this is me, this is my life and this is how to go about it.

VIVO: How did that access you gained through that system shape what you knew about your experience and how you moved forward?

Interviewee: They provided a lot of resources. Using the Amwell app, I was able to quickly search for and connect with a cardiologist who has experience in treating patients like me. The scheduling process was seamless. I simply chose a date and time that worked best for me, and within minutes I had the appointment booked. It was a great relief because I got to know what was wrong and how to go about it.

The Amwell cardiologist took time to understand my medical history and provided valuable insight into managing my condition. They offered personalized tips on lifestyle modifications such as maintaining a healthy diet, engaging in regular physical exercise, and managing stress. They helped me better understand my treatment options and the importance of regular checkups and monitoring. The expert also walked me through the process of getting additional tests and imaging done if necessary to ensure that my condition remained stable.

VIVO: Going back to that day where you initially received that diagnosis, how did it change your understanding of yourself or how you viewed yourself?

Interviewee: It has significantly impacted my life, both emotionally and mentally. In terms of my work life, I now work more remotely. Since my diagnosis, it has made me more conscious about my health and well-being. I found myself constantly thinking about the implications of my condition, not just on me, but on my family, especially my kids and wife.

The knowledge of having this heart defect has instilled a sense of fragility in me. I’m more aware of my own mortality, and I often worry about the possibility of my condition getting worse, making me feel like a ticking time bomb. So I’ve been trying my best to make sure I’m in charge, I’m in good health.

VIVO: Could you sum up how you viewed your health before your diagnosis in one, maybe two words?

Interviewee: Before the diagnosis I would say I was strong, I was healthy, I was kicking, I was active, I was working more in-person than remotely. But after the diagnosis, I would say fragile.

VIVO: How many years has it been since you received the diagnosis?

Interviewee: That’s been since 2019, so that should be four years now. Four years plus.

VIVO: How do you view your health today?

Interviewee: I’m trying my best to balance the whole course. I’m perfect on it now, I’m living just fine. It has been four years, but if this question was being asked two years or three years ago, I would say I was still looking for where to put my foot, taking baby steps to know how to go about it. Now I would say I’m comfortable where I am.

VIVO: Do you feel like receiving the diagnosis for your ASD influenced your self-esteem or your image of yourself?

Interviewee: Yeah. It kind of killed my inner fears and brought out the man in me to face my life challenges. So it kind of motivated me to move on with who I am currently. So yes, I would say it did.

VIVO: How dp you structure your daily life around your disease?

Interviewee: I’m someone that loves innovative tools a lot. Over the years I’ve found several software apps, devices, and resources to be helpful in monitoring and managing my heart health. After my morning routine of getting out of bed, brushing and checking in for my medication, treatment, and supplements, I then dive into doing some exercise. I engage in moderate aerobic activities such as walking, and I have an e-bike, so I do some cycling.

In a week, two to three times, I go swimming for at least 30 minutes. This exercise routine helps improve my cardiovascular health without putting too much strain on my heart. It was prescribed to me as part of what I need to keep up. I prioritize consuming a balanced diet rich in fruits, vegetables, whole grains, and protein. I also limit my intake of alcohol, sugar, and unhealthy fats.

For stress management, I’ve come to a stage in life where I focus more on myself‚Äîmore like self-love. I focus on myself to help me be in shape, be in good condition, at least try to maintain stability with what I’m facing. I dedicate time each day to practice stress-reducing activities, meditation, and deep breathing exercises because they’re very necessary for my condition. Two or three times a day, sometimes before swimming, I do yoga. I can do that at home or where I’m registered, and it helps me in terms of managing and maintaining healthy blood flow, blood pressure, and reducing heart risks as taught by my physician.

I do regular checkups too, and I make sure I have adequate sleep, at least seven to nine hours of quality sleep every night. I make use of apps like Calm, Headspace, and Moodfit to track my mood. I balance my rest and activities—sometimes I do gardening around my house, but I make time to rest.

I use devices too. Currently I’m using Fitbit Versa 3. I wear this smartwatch to continuously monitor my heart rate and track my sleep quality. It also has cool features like sending me notifications if my heart rate goes above or below a certain threshold, helping me stay alert to any potential issues.

I have an Apple Watch too, but I use it mostly when I’m walking to track how my heart rate is adjusting. I use AliveCor KardiaMobile, which is a small, portable device that attaches to the back of my smartphone and records medical-grade ECGs. It helps me track my activities and share the data with my healthcare providers.

For other software apps, apart from Headspace, Calm, and Moodfit, I use My Cardio Fitness tracker to track my physical activities and monitor my heart rate during exercise. It helps me stay within my target heart rate zone to make sure I don’t overstress myself, ensuring I’m getting the right amount of exercise without over-exerting myself.

I also have a heart rate monitor app called Cardiio. This app allows me to measure my heart rate using my smartphone camera, making it easy for me to keep track of my heart health on the go.

VIVO: How difficult is it to keep up with some of these routines you’ve implemented?

Interviewee: It’s just like a lifestyle. For example, maybe you have a daily routine where by 8:00 AM you should be at the office, then by noon maybe you do some grocery shopping, then come back to the office. When you have this routine, it becomes your lifestyle‚Äîdaily activities you do. So it’s more like a lifestyle than a challenge. Sometimes I forget to keep track with some apps, but by the end of the day, I think to use them because I don’t use all these apps and devices all in one day. It depends on the activities that are going on. When I’m doing exercise, I have a particular app to make use of.

VIVO: What about your social life? How does your health affect those?

Interviewee: I’m an online person, so I do that online more. When it comes to in-person social activities, I have a club which I’m a member of. We chat, share our differences, stories, and what we experience. I keep a close relationship with my healthcare provider and with the professional that was assigned to me through the telehealth app.

VIVO: Are you saying you have a support group for your congenital heart disease? Is that one of your social activities?

Interviewee: Yes. I’m still a part of community online.

VIVO: How has this congenital heart disease impacted relationships with friends, family, romantic partners, anybody in your circle?

Interviewee: At first, around 2019-2020, I would say negatively because I kind of shut all the doors of communication because I was trying to accept the new me. I was trying to look deep into my life, trying to understand how to navigate the new me. Back then it was negative because I couldn’t communicate. Even with my kids at home, I gave one-word, straightforward answers, no more late night interactions, storytelling, no more playing PlayStation and all that stuff. I kind of shut the door.

But currently I would say positively because I’ve accepted the condition and I’m living fine with it. I’m trying to incorporate everyone. I make friends and I would say recently it’s been positive, but back then it was negative.

VIVO: You mentioned that you received this diagnosis right before 2020. How did the COVID lockdown experience play into it?

Interviewee: As an online person, I didn’t feel the impact of not interacting with people in person. We used a lot of virtual call solutions, just like what we are doing now. I was close with my family, and my mom was around, so it was more like family stuff. Friends were calling, but it was mainly video calls, not very frequent.

VIVO: Do you talk about your condition with others? Do you share why you made habit changes?

Interviewee: Definitely. At first I didn’t because I didn’t want to share information that might sound like I’m going anytime soon to give them that impression. So I kept it to myself to understand it a little bit. Then before I started opening up to different people, first I opened up to my sister and then to my wife. Even now I haven’t fully opened up to my kids, but they know that dad has reduced some of his schedule and daily activities. They notice I stay home more, but I haven’t broken it out to them yet.

VIVO: As a male, as a father, do you think that gender plays any type of role in how you navigate social situations regarding your health?

Interviewee: Yes, because the way females accept information is different from the way we males accept it. I’m not trying to say we don’t have some males out there that can get this information and look for a way to manage it. Panic will first set in‚Äîeven for me as a man, at first panic set in, uncertainty set in. I was confused. But when it comes to males, we have a way of accommodating some difficulties.

For the female aspect, I think it would play a big role because a female might need something like a male by her side, maybe a husband or spouse to help her navigate. And the same thing applies to males because my wife was there throughout the process. Words of encouragement matter a lot because you can go ahead to do something silly. Constant closeness, being there for you, trying to do some things—that matters and helps regulate how you stress yourself.

VIVO: How much time passed between when you were walking up the stairs and felt shortness of breath and when you actually reached out to your healthcare team?

Interviewee: I was using MDLIVE to try to know more about it. When they broke the news to me after I entered my symptoms‚Äîthe fatigue aspect, shortness of breath and other things‚ÄîI thought, “No, I should reach out to a physician, reach out to a healthcare provider.” After that, I reached out to a lot of resources to understand what was going on. Then I reached out to a healthcare provider and got the breaking news.

The duration from the time I was trying to do my own personal research was about three to one month because after the first occurrence, it happened again at work. So I opted to go and check myself.

VIVO: Do you think that you have felt supported or understood by the healthcare team you’ve been in connection with?

Interviewee: Yes, definitely.

VIVO: How do you approach conversations with your doctors to talk through needs and concerns?

Interviewee: It depends because online we do that through calls and we have a chat feature where we interact.

VIVO: What challenges have you experienced in accessing healthcare due to living in an urban area?

Interviewee: I would say not much apart from the timely manner of the medical center which I’ve visited. Nothing else.

VIVO: What about going to the doctor regularly or going to see your cardiologist regularly? Has that been a point of stress for you?

Interviewee: Definitely. At the first stage, I would say yes. But in 2022, 2023, 2024 currently, this journey is not much of a challenge to me. But firstly it was a challenge because I’m someone who loves online consultation. I started visiting Rush University Medical Center often to discuss the regular check-ups. There were a lot of ups and downs.

VIVO: Can you tell me other ways that you cope with emotional and physical challenges of living with heart disease?

Interviewee: For physical challenges, I make use of the devices I mentioned earlier, just to keep track and monitor my heart rate. For emotional challenges, I use an app called Moodfit. It helps me journal‚Äîif I’m tired of writing, I use the audio feature to journal for the day, how my day went, all that necessary information.

I seek support by connecting with others who have similar experiences. That’s why I mentioned the community‚Äîit helped me reduce the feeling of isolation and provided value, since most of them have long-time experience with their conditions. It helped provide strategies for me. The support groups, in-person meetings, and online consultations have been great resources.

For the educational aspect, I practice self-compassion, being kind to myself, trying to focus more on myself. I recognize that I’m living with a chronic condition and it’s challenging, with natural responses to the ups and downs, both emotional and physical. I focus more on the present, forget about what happened before. The present moment matters. This helps me reduce stress and anxiety. I practice a lot of mindfulness techniques‚Äîthat’s where I make use of the Calm app‚Äîsuch as meditation and deep breathing to help bring my attention back to the here and now.

VIVO: Tell me a little bit about how you envision your future in relation to health and lifestyle?

Interviewee: I see a future where I can navigate through life more easily and do things I used to do previously, just living a normal life. Even though I have a chronic condition, I see a future where I can navigate busy times and set my own realistic goals, achievable goals for myself. No matter the limitation of my current health condition, I can progress a little, and no matter how small it is, I believe it’s something to celebrate.

I would love a future where I can stay more informed, stay with the latest research, treatment, and management plans for my condition. Just like the saying goes, knowledge is power, and being informed can help anyone make the best decisions for their health and futures. So I focus more on what I can control.

VIVO: What are one or two goals that you have for yourself for the next few years?

Interviewee: My number one goal for the future is being able to manage the symptoms. That would be my number one goal, looking ahead to career goals or otherwise. Then it would be to expand my knowledge, not just in the field of my condition, but in my business field because I only go to the office once or twice a week now.

I’d love to find joy in my hobbies again, pursue activities that bring joy to me such as music. I don’t attend events where they play loud music anymore. I also don’t do community voluntary activities I used to. So I would love to find joy in my hobbies again, expand my knowledge, strengthen my relationships‚Äînot just with my family, not just with the support group, but with friends and others I feel connected to.

Finally, I would love to improve my fitness. If I had a magic wand, I would love to have a centralized hub tool that can manage all my future goal tracking progress. Just like I use this financial app called Mint for budgeting and setting financial goals, I would love to have such an app for health goals to help me track: “I’m done with this. I’m progressing with this. This is going well.” That would be great.

VIVO: What’s the very best experience you’ve had within healthcare and how did it make you feel?

Participant: I would say support. Without the support, I think I’d be confused about what to do first and how to go about it. Support from both my healthcare providers and primary physicians. My consultation therapy, a lot of support. Even the support extends to my family, to my friends, to my wife, my kids.

It makes a lot of sense when you have a health condition that you’re trying to navigate, you just received this shock and then you have a lot of support. It matters not just in the healthcare field, not just from healthcare practitioners, but in your personal social life, business life, and everything. It makes a lot of sense that way.

VIVO: What about what’s the worst experience you’ve had in healthcare?

Interviewee: I would say in-person delays, but that is just regular stuff. So I wouldn’t say it’s the worst experience, but for me, I would say delays‚Äîhaving delays from your appointment meeting times. That’s why I said I’m an online person. I love online consultation.

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

Interviewee: I think they’ll bring up more sophisticated solutions to help with not just my condition, but different other health conditions. I believe they’ll strengthen their support and make more time or bring in more experts to help people with different conditions.

Personalized medicine, digital health support, telemedicine, virtual consultation, and remote patient monitoring will become even more widespread, making healthcare more accessible and convenient for patients. Wearable technologies will improve and become more sophisticated, enabling enhanced real-time monitoring of vital signs and other health indicators.

I believe they should be able to incorporate AI because AI is a wonderful innovation, a wonderful feature that should be in every software solution and health application. I believe it’ll play a growing role in healthcare, from analyzing medical images for diagnosis to assisting in drug delivery and predicting patients’ outcomes.

VIVO: What advice would you give someone who is newly diagnosed with a congenital heart condition?

Interviewee: First off, I would say the best advice you ever get in life is the one you give to yourself. The person should try their best to do a lot of background research about what’s going on, get a lot of resources. I’m not saying you shouldn’t get it from your healthcare provider, but also get it by yourself‚Äîeducate yourself. Learn as much as you can about your specific condition, potential treatments, lifestyle modifications, and support resources. This knowledge can help you feel more in control and empowered to make informed decisions.

Build a strong support system, reach out to friends and family because they’re very important, and connect with support groups for emotional support. Surrounding yourself with understanding and supportive people can make a significant difference in your journey.

Also, work closely with your healthcare team. Collaborate with your doctors, nurses, and other healthcare professionals to develop a comprehensive treatment plan that addresses your unique needs. Always ask questions and be an active participant in your care.

Participant Profile:

• Male heart disease patient diagnosed with Atrial Septal Defect (ASD)
• Based in Chicago, Illinois
• Works as CFO in a healthcare organization
• Works primarily remotely due to health condition (for past 3-4 years)
• Diagnosed in 2019 (~4 years of experience with condition)
• Heavily relies on digital health tools and applications to manage condition
• Key challenges: Adapting lifestyle, managing stress, maintaining work-life balance
• Priorities: Symptom management, regaining hobbies, strengthening relationships