What You’ll Learn

A woman in her late thirties with four children shares the impact of having multiple diagnoses, including congenital heart failure, on her family life, work, and mental health. Her story deepens our understanding of the broader impact of life with chronic conditions and the complexity of balancing medical care, caring for others, and self care. 

Interviewee: I’m 37 years old. I’m married. I have four children. I live in Mansfield, Ohio, but I don’t really work right now because of my heart condition. I have three or four different diagnoses, so I’m juggling doctor’s appointments, and medical tests. I went from working full-time, 70 plus hours a week, down to not being able to work at all. So, I’m currently a stay-at-home mom right now.

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

Interviewee: I think the best experience I had was when I started going to the Cleveland Clinic. I’ve been seeing a cardiologist since I was 16 years old, and going to cardiologists from that age until 37, not a single person has ever told me this. And the doctor walked in the room, and he sat down, and he told me what the diagnosis was, and what all they had seen in the one test they did. And I was like, “Wait a second. I didn’t know this.” And I have an atrial septal defect. I found out at 37 years old that I have it, and that’s a congenital condition. That’s something that has been since birth. I’ve had issues my whole life being able to be mobile, and up, and doing stuff like most other kids would.

Him telling me that kind of put a validation on me, that this whole time when I felt like I was going crazy because the doctors couldn’t find anything with me, at that point in time, and I knew how I felt, it put validation to those feelings. I am forever grateful for my first cardiologist that I had seen. I am forever grateful for him, because he’s the first doctor in 37 years to tell me something, and to make me know that, “No, you’re not crazy. You do have stuff going on, and we’re going to try to figure it out, so you can stop feeling the symptoms every day, and try to get back to a semi-normal life.”

I’m forever grateful to him for that.

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

Interviewee: Probably the worst experience in healthcare I had would’ve took place at the Cleveland Clinic too, but it was with a different doctor. It was when I had my heart cath. My husband is African-American, and when he walked in the room after the heart cath, my mom and my husband were in there, and he walked in, looked around, looked out the door, and then looked at my family like, “This is your family?” Looked at them all kind of puzzled, and my husband and my mother were like, “Yes.” And he sat down, and ended up telling him that, but it was the manner that he spoke it and it’s like, it’s 2024. There’s a lot of biracial marriages, and a lot of new things in marriages that wasn’t the norm for a lot of people growing up. It kind of took me aback, like… You walk in, just because you see a man of color, you want to double-check and make sure? That kind of offended me a little bit.

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

Interviewee: I wish that they would be more honest when it comes to test results interpretations. I tend to have to do a lot of research when it comes to my test results when I have procedures and stuff done, because they’ll come back and say, “It looked fairly normal.” But when you read through it, and you get the impressions that the people that review it leave, there’s a list of stuff listed there, and some of it would be part of my symptoms, and it’s like, “Oh, that would make sense, but they told me everything was fine.”

When it comes to test results, they tell you, “Oh, everything’s fine,” but when you read through them, you see little things in there and it’s like, I know that that’s not the whole basis of everything, but still, those little things, some people do need to know, because they have other medical issues, and that could explain a lot of some things that are happening with their other medical issues. It’s frustrating. Not everybody has the knowledge, like I do have medical terminology knowledge, because I had went to school for some of that, so I do know some stuff. Not everybody has that knowledge though.

It would be nice that they would break down the test results a little bit more, especially for people that don’t have a medical background, or any medical terminology knowledge.

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

Interviewee: With the way the advances are going, I think healthcare could really make a turnaround in 10 years. There’s a lot of things that I know that people, they’re working on, scientists and stuff that I think… One of them I know is there’s a pill that they’re working on. I think it might be overseas, but they’re working on to make your teeth grow back. And I was like, “That’d be cool,” because when I lost my teeth, I had an issue… I don’t have them currently, but I had an issue where my dentures, because I have this thing where if anything’s in my mouth that ain’t supposed to be there, I’m going to think about it constantly.

I thought back then, “That would be really to have a medicine or something that would let your natural teeth grow back.” And then boom, they started talking about it, and they’re doing animal trials and stuff right now. And I was like, in 10 years, I know there’s going to be so many more advances in technology. It just baffles my mind how it happens, the brains behind it, it’s crazy to me.

VIVO: The last time you were inspired to change something about your health, what led to that inspiration?

Interviewee: That would’ve probably been at the beginning of last year. I was working, and 70-80 hours a week as a manager. And one day, out of nowhere, I started getting chest pain, and shortness of breath, and wasn’t feeling normal. And I had to call the ambulance at work, and they took me out, and they hospitalized me for three days. And they wouldn’t release me unless I had an appointment with a cardiologist. I knew something was wrong. They weren’t really giving me too many answers. It was the weekend, but I knew something wasn’t right. I went and seen the cardiologist, and then it spiraled into me having to go to Cleveland, and all this mess. And at that point I was like, “You know what? I think it’s time to make a change on things, especially the way I eat.”

We did a whole switch in our household. We stopped frying things. We started baking things. I cut pork out, and mostly most red meat was out. And instead of using hamburger to make meals, we were using ground chicken, or ground turkey, just trying to get healthier options. Stopped drinking soda, started drinking more water, and natural green tea, just because I have four beautiful children, and three beautiful bonus children, and I have to be around for a while. Our youngest is nine. She still has a long way to go, and I have to be around, because I don’t want my children to have to experience losing their parents when they’re young, because I refused to do what the doctors asked me to do and make a lifestyle change.

VIVO: You shared with me you’ve been diagnosed with congenital heart failure, and you said you have a couple other diagnoses? What are those specifically?

Interviewee: I have POTS. And I also have coronary artery disease, as well.

VIVO: What age were you when you received each of those diagnoses?

Interviewee: The coronary artery disease, they diagnosed me with that in November of last year when they did a heart cath. So, I was 36 then. And same thing with the congenital, was last year in April, so I was 35. I hadn’t turned 36 yet. So, that was at 35. And then POTS, I got diagnosed with POTS back before anybody even really knew what POTS was, and that’s when I was 16. So, 16, 35 and 36.

When I got diagnosed with POTS, I had to do a lot of lifestyle changes. I had to learn how to not stand up quickly, and take my time getting out of bed, so I didn’t hit the floor. I had to take on a more higher sodium diet, making sure I eat stuff that was higher in sodium, like ketchup, and dill pickles, because that helped maintain my blood pressure to keep me from passing out. Even at 16, and I had to make changes, and there’d be days at 16 that I’d be so tired because POTS carries a lot of fatigue, and I would be in the house, not being able to go hang out with friends, because I’d be so tired. I’ve been having to deal with a lifestyle change since I was 16, regardless.

VIVO: It sounds like both are truly relevant. Let’s go with the diagnosis you received at 35, so that we can talk about the shift, some of the changes you were sharing with me that you had made most recently. How would you describe your overall health before you received that diagnosis?

Interviewee: Besides the POTS, I was fairly healthy. I could work a full-time job, so it wasn’t an issue then. But once I got that diagnosis, and after the incident that had occurred in March, I wasn’t able to work full-time. I tried to, but I was only able to work a couple days, and I would be so tired that I would have to call off, and let them know that I was having issues that day, because I’m very honest with my employers about my medical issue, so I would let them know, “I am having a bad day today. I feel off, I’ll be back tomorrow.” Then it got to the point where it was causing too much because of missing work, so then other people have to pick up my slack, so, I would end up getting let go, or I would have to quit. They would ask me to quit. I wasn’t able to maintain the job at that point.

I ended up stopping working, and my husband picked up extra hours to help us. But it did turn out not being able to work, and losing both incomes, we weren’t able to maintain our home, so we had to give up our home, and we had to move back in with my family, so we were able to make it. That was a big change there. We had to leave the city we were living in. My husband had to quit his job he had, to find a job here. It was a big, big shift for us.

My daughter has autism, so it was a big change for her as well. And then being a caretaker of a child that has issues, and then I medically have issues, where some days I barely can get out of the bed with how I feel, and then having to still take care of my child, and help with my husband with things, it’s physically draining. If I help my daughter do anything after I help her with something, I’ll be so drained that I have to sit down, and rest a minute.

VIVO: Prior to the diagnosis, did you experience that same feeling regularly, like if you did exercise, or have physical activity?

Interviewee: No. We used to go out, and go to the beach during the summer time. And this summer, we couldn’t even go to the beach, because the heat, I would step out into the heat, and I would instantly be so drained, hard to breathe, and I would have to come back indoors. It’s definitely a big change.

VIVO: You mentioned some of the things you’ve changed about your diet now. Can you tell me a little bit what your diet was like prior to receiving that?

Interviewee: I worked at a fast food. a fried fish restaurant. I worked 10, 12 hour days, so I was eating fried food six, seven days a week, and I would eat when I get home. I would eat the healthier stuff, but I was at work most of the day, so I was eating more of that than what I had at home. After the diagnosis, even though I did go back to work there, after all of that, I went back to work for a little bit, and then until I eventually had to quit, because I couldn’t keep up with it anymore, I had an exception from the general manager to be able to bring in my own food at that point, so I didn’t have to eat the fried food, because of what was going on.

VIVO: How were you managing work-life stress, with working that many hours, and kids to raise prior to being diagnosed?

Interviewee: For the most part, my husband, at that point, he was working a night shift job, so he handled most of the daytime stuff, but it wasn’t bad. We had a good schedule, and a routine down, and I was able to get a sufficient amount of sleep. My husband would take care of the kiddos while I was sleeping. It was easy to manage. It wasn’t too bad. Some days were bad days, because being in customer service, you know how things can go. But, other than that, it was good. I wasn’t having any issues with that.

VIVO: Can you tell when you got that diagnosis that day, your general initial reaction to it?

Interviewee: Initially, I was shocked, because I really didn’t think that they were going to find anything, especially because of my age. II was 35 at that point, I didn’t really think at that age that they would find blockage of any type, and it was mind-blowing. I was like, “Okay.” That was the slap in the face. “Okay, now I know what’s going on. Now I know, now I need to change things. Now I need to do better.”

Did I regret some of my life choices at that point? Yes, terribly so, yes, because I’ve battled addiction, and did I really sit down and reflect? Yeah, I did. I sat back, and I reflected all the way home from everything. I was like, “What if I would’ve did this differently? What if I would’ve did this differently?” It did take a big impact on me, and it took me a good few days to really work through it and be like, “Okay, I got this diagnosis now. Now I’m going to do this, and I’m going to keep pushing forward, and we’re going to make the best of it.”

VIVO: Were there any other emotions that just surfaced right to the top for you?

Interviewee: Shock. Shock was definitely one of them.

VIVO: What about when you were waiting for those test results? In that time when you were waiting for them to actually give you the diagnosis, what emotions did you experience in that space?

Interviewee: It was stress. Like that was the biggest emotion, because going to the hospitals when I’m experiencing the chest and everything, and them looking at you, and my husband, and looking at us, and like, “We don’t know. We can’t tell you what’s going on. We don’t know.” It was frustrating, because why can’t you give me an answer? I know this… And then it made me feel like I was mentally… Something mentally was wrong. “Am I going crazy?” “Is that what it is? Am I going crazy?” Because I know why I’m experiencing these, but they swear up and down there’s nothing wrong. And so, it really messed with my mental health bad. My mental health was really taking a toll.

VIVO: And do you view yourself differently since you’ve received the diagnosis?

Interviewee: A little bit. Because my daughters, I have girls, and I have two girls and two boys, because my daughters, a lot of women with heart disease don’t experience the same symptoms as males do, and I want them to see how strong I was, and to see how I kept pushing, and trying, and doing everything I could for them, and to know that even if you do have a medical diagnosis, you can still keep going. That’s been my biggest influence right there, my girls, to do, and push.

VIVO: Who were your primary sources of support during this time? Whoever comes to mind. And can you share any specific stories of how they supported you?

Interviewee: My husband is my biggest supporter. I’ll get frustrated when I’m not feeling like we’re getting answers or anything. And I’ll tell him, because we’re in the middle of batting with social security right now for me, and I’ll tell him, “I’m ready to give up. I’m ready to give up. I’m going to find me a job. I don’t care how I feel. I’m going back to work.” And my husband will be like, “No, you’re not. I have this. I got us. You need to focus on your health.” He’s my biggest motivation, my biggest support.

VIVO: And how did they help you kind of cope with the medical nature of it, and the impact on your life?

Interviewee: My husband’s very supportive. As long as I cook, he don’t care what he eats, and he’ll eat it. And he’s my biggest support on eating healthy. He likes the energy he started receiving once we started eating a lot healthier, so he backs me 100%. And if I ever need to cry, or vent about how I’m feeling about that day, he’s always right there. His ear is always right there. He always will encourage me, listen to me when I need to, so.

VIVO: That’s great. Just checking the time. We’re doing all right on time. We have about 17 more minutes, so I still have a couple questions for you. Are you doing all right on time too?

Interviewee: You’re good. You’re fine. You’re good.

VIVO: Great. What challenges have you encountered in managing your health?

Interviewee: It’s more so that I tend to have a lot of doctor’s appointments. I have three separate cardiologists at Cleveland Clinic, and we have one vehicle, and our child has school, the children have school, so there’d be days that sometimes we have to be in Cleveland before they even have to be to school, and trying to make sure that we have a reliable person to make sure that they get to school, and get them up in the morning for us, and get them picked up if we’re not going to be home before they get out of school. That’s been the biggest conflict problem that we have since my diagnosis, because we do usually have several appointments a month in Cleveland to go to. It’s trying to find the transportation for the kids.

VIVO: And so, how are you managing the heart disease aspects in the form of, you said you have three cardiologists, so how frequently do you see the doctor? How frequently do you have to take medications? How is managing the heart disease on a daily basis?

Interviewee: Currently, they have not given me any medication besides the pulmonologist up there, because I do see a pulmonologist. I’m seeing an allergy doctor up there now, a ear, nose, and throat doctor, because they think some of it might be in my throat from when I was intubated. Usually we see the cardiologists about once a month or once every two months. But here lately, it’s been every month, and this month coming up, I have two separate appointments that I have to go to. I’ll be in Cleveland twice this month, instead of only once. It’s usually about once a month, sometimes twice a month I got to go. And like I said, the only medicine I’m currently on, besides nitroglycerin as needed for my chest pains, is they put me on Symbicort inhaler. It’s an inhaler that has steroids, because I do have asthma on top of all this as well. That’s the only thing. But, I think they’re kind of waiting, because I’m currently awaiting to have a cardiac MRI done as well, because they want to see exactly how big the hole is in my heart, and exactly what’s going on, because they are contemplating having to do open-heart surgery.

I’m waiting on my insurance company to get all the paperwork they need from the doctors to approve it, so I can have that done. They’re not putting me on any medicine until they determine that part. And once they do the cardiac MRI… That’s the only test that’s holding up almost everything for the rest of the doctors. And I’ve already had the test that my insurance company needs, I had that done at the beginning of August, and they still have not sent it to the insurance company to get approved. I’ve been messaging them every day, and they keep saying they haven’t gotten anything back from my insurance company.

VIVO: Do you feel like living in a rural community has impacted your access, or the ease of any of this throughout your experience?

Interviewee: No, because anywhere we live, even when we were living in the big city, in Columbus, Ohio, going to Cleveland, it’s still a journey. All my doctors are there, and it’s at least a two-hour ride. Either way, I would’ve looked at it, it would’ve been a distance.

VIVO: How has your diagnosis impacted your emotional wellbeing?

Interviewee: It’s really been taking a toll on my mental health. I do have major depressive disorder, and I have PTSD as well. And it’s been really triggering both of them a lot. I’ve been having more PTSD episodes because I’m stressed out, worried about my health, and I’ve been having more depressive episodes where I’ll start crying, and really feel like giving up.

VIVO: Has it impacted any of your social life?

Interviewee: I don’t go out as much anymore. If I go to the grocery store, I have to go and make it as quick as possible, because if I’m on my legs too long, I start feeling wobbly, like I’m going to pass out. I don’t go out, hang out with friends anymore, because if I start having shortness of breath or anything like that, they really don’t know what to do. They’re not my primary person that looks after me. Like my husband would know what to do. But they wouldn’t know what to do. I don’t leave the house much anymore, since all this has happened, because either I get drained too quick, and I’m ready to come home if we’re out and about, or I physically cannot muster up the strength to go out that day.

VIVO: Do you think there’s anything unique that you experience about your heart condition as a female, or any impact that’s different because you are a woman?

Interviewee: I think as a female, even when you’re sick, and have medical conditions that are causing fatigue, and causing issues where you don’t feel like doing much of anything. I’ve experienced people calling me lazy because I wouldn’t have much energy. Because I think as society, they look at a woman as, they’re strong, they can muster through whatever, especially if they’re a mom. Moms don’t get sick days. And that’s not necessarily true. I have days where I can’t get out of the bed, and my husband takes over. I think that as a woman, having a heart condition and not having the energy to do what society would want you to do, I think that, with being a woman, that’s one of the hardest things to deal with, with having a heart condition, is people wanting to call you lazy, because you don’t have the energy to do it, and that really will mess with your mental health too.

VIVO: Looking back, is there anything you wish you had known, or done, I guess, differently before your diagnosis?

Interviewee: I would’ve ate better, and healthier, and took a little bit better care of myself. I guess I kind of felt like, “Oh, it couldn’t happen to me.” And then when you get that diagnosis, that’s one of the reasons why the emotion was shock, like, “Oh, it can happen to me.” I think that that’s the biggest one.

VIVO: Looking forward, do you have goals in terms of health and wellness?

Interviewee: I’m working on trying to get my symptoms under control so I can start walking some more Eating healthy only does so much. I’m trying to get walking a little bit, so maybe it can help me shed these little few extra pounds that I need to shed, and that’ll really help as well, if I lose those. It’s only like 20, 30 pounds I got to lose to be right where they want me to be with my height. I think doing that, get my symptoms under control, where I can enjoy walking for 30 minutes, or something, without feeling like I got to call the ambulance would really be… I’m looking forward to that. I’m trying to be as patient as I can with all the tests that the doctors are ordering to try to get answers, but I’m most looking forward to that, to being able to exercise a little bit more, and try to get my weight back under control.

VIVO: What advice would you give to someone who’s newly diagnosed with heart disease?

Interviewee: Don’t give up. It’s not over. It may seem like it’s over right now, but it’s not. There’s many advances in technology in medicine. The doctors will figure out a treatment plan for you, and it’ll be all right. It’ll all work out.

VIVO: Is there anything else you’d like to share about your journey with heart disease?

Interviewee: I wish there was a little bit more information on women with heart disease, because I know there’s a little bit out there, but a lot of it, when you read it, it says, men, or something like that. It would be really nice to be able to have more information for the females. Stuff that affects females more than males. That’d be really nice.

VIVO: Is there a period of time, like pre-diagnosis, or post-diagnosis that you would prefer that those materials be?

Interviewee: Both. Having, in school, having the female kids, female children, reading it, and knowing what they need to look out for, and what they could eat to help prevent it from happening. And then even after diagnosis, there’s a lot of questions that sometimes you don’t remember them when you’re in the doctor’s office. And having something that you could read, and maybe answer your own question would really ease a lot of people’s minds.

VIVO: Sure. Well, that is extremely helpful. I appreciate your time and your participation in this conversation. Thank you for sharing some real truths with me today. I appreciate you.

Interviewee: I appreciate it. Thank you for your time today.

Participant Profile

• Female heart disease patient (multiple diagnoses including POTS, atrial septal defect, and coronary artery disease)
• 37-year-old mother of four living in Mansfield, Ohio
• Previously worked full-time (70+ hours/week) but currently unable to work due to heart condition
• Started experiencing serious heart issues in March 2023 (at age 35)
• Diagnosed with POTS as a teenager (age 16)
• Married, biracial family
• Also manages asthma, major depressive disorder, and PTSD
• Key challenges: managing frequent medical appointments at Cleveland Clinic (2 hours away), transportation challenges with one vehicle, and significant lifestyle/work limitations