What You’ll Learn

A 32-year-old mother diagnosed with heart failure shares what would make her journey easier (more telehealth) and the changes she has made to her diet and life to regain her health.

Interviewee: I’m 32 and I’m married. I’m a technologist and I have a kid and live in Oregon.¬†

VIVO: Dan you share with me the best experience you’ve ever had with healthcare and how that experience made you feel?

Interviewee: The best experience I’ve had with healthcare was when I was initially diagnosed and having to find healthcare that will work with my insurance. I think it was very easy for me that I got a hospital that I can use my insurance for. I think that was the best part. The part I would say I wasn’t really happy about was the whole process of having to visit the hospital, the diagnosis process and the way I felt about my emotional health. I think that was the only period I felt bad. But having to get a hospital working with my insurance, I think the debt from the hospital, the payment, wasn’t much with me because I had my insurance paying part of the treatment.

VIVO: What’s been the worst experience you’ve had with healthcare?

Interviewee: The worst experience is the diagnosis period where it’s so overwhelming and confusing. That was before I even got in contact with my hospital for the diagnosis. It started off with the symptoms I was having, and I visited two different hospitals before I went ahead with the hospital that’s providing care to me right now. It was difficult because I feel like the two other hospitals weren’t really good. I feel like the healthcare system was poor and it was stressful.

VIVO: So, you had to go to multiple hospitals till you found one that aligned with your insurance. Is that correct? And that was stressful?

Interviewee: Yeah. And it wasn’t just the insurance, it was about the kind of service they were providing. It wasn’t straightforward and it was difficult. But I feel like the hospital I use now is seamless and seeing the doctor or the cardiologist is very easy right now.

VIVO: Is there anything that you think, in the healthcare space, that is not being said that should be said?

Interviewee: I feel like telehealth has made things really easy. You can talk to your doctor online, you can ask questions, you can get your refill for medications online. I feel like right now with telehealth, healthcare is very easy.

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

Interviewee: I expect it to be better. I feel like more advanced, more devices and medication in more years to come.

VIVO: What specific heart disease were you diagnosed with?

Interviewee: Heart failure.

VIVO: What age were you when you received the diagnosis?

Interviewee: That was two years ago. I was 30 then.

VIVO: How would you describe your overall health prior to your diagnosis?

Interviewee: My overall health… I was healthy, but at some point I started having some symptoms that wasn’t there before, and that was what led to the diagnosis.

VIVO: Can you tell me about those symptoms?

Interviewee: I was having fatigue, shortness of breath, and I felt like I had something in my chest. When I went to the hospital, it was fluid build up around my heart, and the shortness of breath, and I couldn’t do regular jobs. I couldn’t run, I couldn’t do exercise, I feel like I’m passing out. That was what led to the diagnosis.

VIVO: How long would you estimate the timeframe between feeling those symptoms regularly and actually seeing a doctor about it? 

Interviewee: I would say two months.

VIVO: What were some typical daily activities that you did every day before your diagnosis?

Interviewee: I do the morning run and biking, cycling, and I do sit-ups and yoga. When I felt really tired, when I started feeling ill when I do the regular things that I do every day, and I feel extremely tired, I knew that something was not right.

VIVO: What about other day-to-day things? School, work. Anything like that? Did you notice anything being impacted in those areas?

Interviewee: I work part-time and sometimes I work online, so it’s not something that requires a lot of energy except I have to show up and work, and it was normal. But I feel like if I walk long distance than usual, I feel really tired and I’m losing breath, and then I have to sit up and try to catch some breath.

VIVO: Did you have any concerns prior to the diagnosis? I know you shared some of the symptoms with me. Did you have any thoughts or concerns about what it could mean?

Interviewee: When I was feeling the symptoms, I had to go online to browse my symptoms and I was seeing different diagnoses that I wasn’t sure of. I saw coronary artery disease, something like that. There were other… High blood pressure. I wasn’t sure about what it was, so I had to go for proper diagnosis.

VIVO: Had you already been diagnosed with high blood pressure?

Interviewee: No, I haven’t. It was online when I was checking the symptoms that I was experiencing.

VIVO: Were you aware of heart failure and its risk factors before your diagnosis?

Interviewee: I know of heart failure, but the heart failure I know of is at its really serious stage where you see someone passing out and they’re like, the person has a heart failure and the person probably die from the process or spend days in the hospital. I didn’t know how it starts and the kind of symptoms. It was from my own diagnosis that I started knowing more about heart failure.

VIVO: Did you have any sort of preventive measures or health screenings related to heart disease prior to the diagnosis that you’d gone through in your previous medical journey?

Interviewee: No, I just do the regular stay healthy, eat healthy, avoid fat and oil, meals that contain fat, cholesterol and things like that. I try to stay healthy. That was what I was doing prior to my diagnosis.

VIVO: What about your work-life balance? How did you manage stress in your work-life balance?

Interviewee: I tried to meditate and I use stress apps to meditate and I try to take a break, sleep, rest, and read, something that would keep my mind at ease. That is what I was doing to manage stress.

VIVO: Can you tell me more specifics about actually being with the doctor and being diagnosed with heart failure?

Intervieweet: It took a while… I went to the hospital and I did some quizzes. They have the quiz that you would answer about your health, and then some questions, and then the diagnosis, then check my blood pressure, things like that before they came up with the diagnosis.

VIVO: How long did that process take from the initial test, and you said there’s some waiting? What was the time between actually getting a diagnosis for you?

Interviewee: I got diagnosed in one week and I started my medication. I was put on some medication like the ACE inhibitor. I think it helps to relax blood vessels and lower blood pressure, and beta blockers, things like that. It was in a space of one week.

VIVO: Can you describeyour initial reaction upon hearing the diagnosis and the top three emotions you felt in that moment?

Interviewee: I had the mixture of fear, confusion because I was scared of having crisis where I have to pass out and someone isn’t around, or I don’t know what’s going to be of me. Because I know of people having heart failure and they die. I was really scared about it.

VIVO: Do you remember any of the feelings you felt within that week, that timeframe before you actually got the diagnosis when you were just waiting? What was that emotional experience like for you?

Interviewee: I was scared and I was confused… I was scared of surgery because I don’t know the extent or the whole thing, the sickness. I don’t know the severity. I was scared of surgery, the situations where they would have to do a transplant or bypass. I was really scared, but I know I had issues with my heart.

VIVO: Did you end up having to have any of those surgeries?

Interviewee: I was initially scheduled for surgery. But at some point, I had to go through the whole diagnosis process again and the doctor said, from the whole diagnosis and with the medication I was taking, there was a little improvement. I still had options of trying to be on medication for a while, then I can go in for a surgery. It’s called the valve repair surgery, something like that.

VIVO: Am I understanding right that you’re currently monitoring, using the medication, seeing how it’s going, but that’s a potential option if your doctor recommends it?

Interviewee: Yeah.

VIVO: Do you view your lifestyle differently since you were diagnosed with heart failure?

Interviewee: Yeah.

VIVO: How so?

Interviewee: Because right now I’m aware of the importance of maintaining a healthy heart. And improving my diet, physical activities, trying to manage stress and making medical research online to know things to do, things not to do.

VIVO: What are some of those things that you observe or read to do or not do that you’re trying to introduce into your lifestyle?

Interviewee: The type of diet, and I have to limit sugars and try to stay hydrated, drink plenty of water. My weight. And I have to focus on saturated fats, like avocados, nuts, and try lean proteins, all these. The doctor is going to tell me things to do and things not to do, but I still like to do my research myself to better manage my health.

VIVO: Do you feel like you’re doing that successfully?

Interviewee: Yeah. I’ve not gone in for surgery yet, so I feel like I’m doing something.

VIVO: Did you make any immediate changes to responsibilities that you had once you received the diagnosis?

Interviewee: No, the only responsibility I had was school run for my kid, having to drop my child off and back from school. I had someone to do that. I used to do my home chores, as a wife and as a mother. But cleaning, I got someone to do that. And those things that would make me lose breath and stress myself a lot, I try to get someone to do that.

VIVO: Who are your primary sources of support? Anybody that comes to mind for you that really supported you through this time?

Interviewee: I would say my partner, and my family, and my healthcare provider.

VIVO: Can you share any specific stories of how any of them supported you during this time?

Interviewee: I would say emotionally, financially and physically, relieve me of some duties. The grocery shopping, things like that, I have my partner do it, or I have a sister come around to do that for me. And then, the support I get from my healthcare provider, treatments, and emotional support. And questions, when I have questions and someone is there and tell me.

VIVO: How did you cope with this diagnosis?

Interviewee: Like I said, I felt very bad about it. At some point, I felt depressed and scared. Having my partner always trying to talk me out of that mood, making me to see how positive the whole situation can turn out to be. And people that have been through the process and they’re still living. And the emotional support from my healthcare provider having to tell me, lecture me more or teach me more on what I should expect. And it’s not the end of the world, trying to encourage me.

VIVO: You shared with me some of the lifestyle changes you had to make. You mentioned exercise, medication. I’m curious if there were any regarding where you live, or school or work, or budgeting. Anything like that that was a lifestyle change that was a result of this diagnosis.

Interviewee: Yeah. Having to do with my budget, I have to cut down a lot of spending because right now I have to be on medications. I don’t have to work two jobs or three jobs to get money and spend on shopping, buying things, that kind of luxury life. I had to cut down on it so that I don’t get into a stage where I am unable to get proper treatment for myself.

VIVO: Can I ask, did you smoke before or after the diagnosis?

Interviewee: I wasn’t smoking, but I was drinking. But, I’m no longer drinking.

VIVO: How would you say you’re managing this diagnosis on a day-to-day basis? What are examples of how frequently you’re seeing your doctor or other ways that you manage it?

Interviewee: I try to manage it online, getting to speak to the doctor online. And I use Talkspace. Talkspace is like a platform where you can get healthcare providers or therapists. Because I was having emotional stress and psychologically, so I had to get through with Talkspace to meet the therapist to help me, especially with the drinking, having to stop drinking, that process. I needed someone that can walk me through the process of stopping drinking.

VIVO: And what challenges have you encountered in managing your health?

Interviewee: The challenges I’ve encountered is having to stop things that I do on a regular. It’s not very easy. And then, having to get the right healthcare provider for myself.

VIVO: You mentioned you’re in Oregon. Are you in an urban or rural area?

Interviewee: An urban area.

VIVOt: Do you think that has had any sort of impact, being in a more urban area, on your access to healthcare or support for your heart failure?

Interviewee: Yeah. Because the movement from my house to the hospital, if I was in the rural area, I think I would have issues with getting the right medication. And for my checkups it’s going to be very difficult for me even to my appointments. So, I need somewhere that I can easily access.

VIVOt: And how frequently are you seeing your cardiologist?

Interviewee: I think sometimes two times in a month. It depends on how I feel. If I feel like there’s something different about my health or a different kind of feeling, I can call to schedule a time for meeting.

VIVO: And has this diagnosis had any financial impact or burden on you?

Interviewee: Yeah. I have to do spending on medication, refills and having to go to the hospital. We have to cook two different kind of meals because the kind of things I eat, I wouldn’t want my kid eating the same thing. There’s some nutrients that my kid wouldn’t be having if he keeps eating the kind of food that I eat. I try to cook two different meals.

VIVO: What’s an example of two different meals you’re creating and why?

Interviewee: Because sometimes I have to eat food with lean proteins or grains, whole grains, like whole grain bread. And the kid might need something different. And we need sodium and canned soups, things like that. And these are things that my child would want to try to eat. And because I don’t take things like that, I’ll be depriving my child or something like that. And I feel like that’s not cool. That’s why I have to cook different meals and try to prepare different things. I might need zero sugar drinks, and not a lot of sugar for my kid, but sometimes children would like to have drinks that have a little bit of sugar in them, things like that. I have to buy different things.

VIVO: Have you encouraged any of your family or your support system to make their own lifestyle changes as you’ve made some of yours?

Interviewee: Yeah, I do that. And I have… There is this offline, it’s like a forum, where people with heart disease, you can come and share your views and whatever is disturbing you for people to know that… It’s like a talk meeting where you have several people coming around to share what has been bothering them and you get to learn from them. I feel good having to educate people on how to stay healthy, things to avoid. And I feel like I’m more conscious of my health and I try to stay healthy and I want everybody around me staying healthy.

VIVO: Absolutely. Talk to me a little bit about how you would say being diagnosed with heart failure has impacted your emotional well-being currently.

Interviewee: I try to stay positive and I’m open to any kind of occurrence. I feel like right now I feel really positive about life. I try to stay positive than the way I used to be because I want to be healthy, I want to stay alive, and I want to go past this scene of being very ill. I feel like I’m being more positive right now.

VIVO: Have there been any social changes your day-to-day life?

Interviewee: Yeah. I’m normally someone that I have a small circle when it comes to friends. Right now, the going out for dinners, I try to cut it. Sometimes I can go… Before now, could go three dinner dates with my friends, but right now I try to maybe limit it to one, and it’s one in a very long time.

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

Interviewee: Yeah. I think I should have tried to stay away from a lot of fats and oil and try to eat healthy meals. I think that’s what I should have done before now.

VIVO: And then, what are your future goals in terms of health and wellness?

Interviewee: My future goals is to get better and be completely healed from the whole heart failure thing, and to be healthy and to avoid going in for surgery.

VIVO: Do you think there are any specific resources or areas where additional support could be beneficial?

Interviewee: Yeah. Probably incentives from the government for people with heart failure or try to help them with medication. A free support that is quite efficient for people that are not able to afford a good treatment, I feel like it’s really going to help.

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

Interviewee: I feel like the person should be positive and make a lot of research on their own. It’ll help them to learn more about how to stay healthy rather than having people advise them. I feel like if you do your research, you would get to discover things that someone else might not tell you because you know how you feel. And the way I feel, someone with heart failure might feel a different way. We might not have similar symptoms. From your symptoms, you can be able to do your research and know what’s best for you.

VIVO: Generally speaking, is there anything else you would like to share about your journey with heart disease or any more advice for another woman who is going through a diagnosis?

Interviewee: I feel like I’ve said all. But I feel like the person has to be prayerful and to be more positive, try to stay healthy. And those bad habits, like drinking or smoking, it’s not something you can say, “Because I drink every day in a week, I can cut it down to two days or one day.” The thing is abstinence, you have to abstain from alcohol and anything that would temper with your health and well-being.

Participant Profile

• 32-year-old female heart failure patient
• Oregon (urban area)
• Married with one child
• Technologist, working part-time
• Time Since Diagnosis: 2 years (diagnosed at age 30)
• Currently on medication (ACE inhibitors, beta blockers); monitoring condition with potential for valve repair surgery in future
• Key Challenges: Emotional stress, lifestyle adjustments, managing diet, financial considerations for medication and treatment
• Coping Strategies: Online research, telehealth services, therapy through Talkspace, support groups