What You’ll Learn

A woman shares her journey from symptoms to diagnosis of heart failure and the wisdom that comes with learning live with a fatal disease. She recalls the best and worst encounters with healthcare professionals across her journey, revealing that medical experts can learn as much from their patients as patients may learn from them.

VIVO: What heart disease have you been diagnosed with?

Interviewee: I had no idea that I had anything wrong until my symptoms, which I ignored, put me in the hospital. I was diagnosed as under chronic heart failure, which was classified as congestive heart failure, brought on by a Takotsubo Cardiomyopathy.

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

Interviewee: It’s funny that you say that, because I automatically think, boy, it’s hard to remember those best experiences when it’s so easy to remember the negative ones, but I think they’re polar opposites. When I think about my best experience, it has to do with the doctors, the nurses looking at you and speaking to you in a “human, down-to-earth” manner. Those times where you’re heard, and you can emotionally connect, or even laugh with a doctor, rather than feel smaller than this person that’s working on saving your life.

Last time I was hospitalized, this doctor was so cool, so amazing. I told him, “Well, you look tired today.” He’s like, “Are you saying I look awful?” We gave it back and forth. It was a real personal experience. Those are my fond, if you can think of a fond memory when you’re working with your health, or in those settings, or times that they’re personable.

VIVO: What was one of the most negative ones? Give me that other polar opposite end of the spectrum.

Interviewee: The opposite is when you’re belittled, or made to feel smaller than what you are. For example, my doctor, and this is one, a doctor that came in to see me was doing her notes in front of me, her notation, and said, “patient is a middle-aged obese woman.” I’m like, “You’re right. I am overweight, but do you have to do this right in front of me?” When there’s words and terminology used in front of you, it’s like, talk about me like that behind my back. You’re like, “I don’t want to hear it. I’m already…”

There’s a personable human way to come across, whether that’s not so robotic and almost, it’s insensitive doctors. These are my least… Somebody that’s insensitive to human nature, especially when you’re in a predicament. You’re not feeling good.

Mine is tied around emotional states rather than an actual experience with medicine, or a machine, or something that went wrong that way. It is more of emotional experiences for me that are positive and negative.

VIVO: What’s something that is not being said in healthcare that you wish was being said?

Interviewee: I could go right down that whole conspiracy theory thing, but maybe the things that are being suggested to patients, not particularly in regards to what may be best for them, but everybody’s put into this one size fits all box, instead of being able to look outside and treat people individually. I think it needs to be said that everybody’s different, not everybody’s going to react the same, and maybe we can give some leeway here or there.

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

Interviewee: It could go either way. In an ideal world, it’s going to be more comfortable setting, like we’re doing right now. It could be from my own home, it could be the healthcare setting to me is moving away from these man-made drugs and more into a naturalistic, for something that’s everything that has been created, there is a cure out nature, even light and sound healing type things.

A real futuristic AI-generated, which AI as technology, it’s not that personal, but it can introduce humans to becoming these things, to being more interconnected and more natural. I could see it being natural.

VIVO : What was the last time you were inspired to change something about your health, and what led to it?

Interviewee: Truly and unfortunately, inspiration to change my health has been through negative experiences, such as finding out, so I’m having symptoms and I’m ignoring them. You end up in the hospital, and you find out, “Well, your ejection fraction, is down to 19%.” It’s like, wow, you’re this close to being done with living your best life and something’s got to give. Something’s got to change.

It’s those, ignoring, I don’t know even why, but ignoring symptoms that force me to have to change and do better. Smoking, drinking caffeine, salt intake, these things that when you’re younger, you don’t think are going to affect you, and you do. You’re invincible, and all of a sudden you’re not. You need your change.

VIVO: Are those all things you have changed since your diagnosis? Smoking, salt intake, abd caffeine.

Interviewee: There’s things that I have to do that are different, like being able to manage stress, and grounding myself, and finding emotional intelligence in a way that’s not going to affect my body, because these are all things that on the surface, you maybe don’t think about, but do affect your health, the way that you eat, the way that you think, the way that you handle stress. This is my experience.

VIVO: What was your routine prior to being diagnosed? How would you describe your overall health before you knew you had a heart disease?

Interviewee: I thought it was good. I thought I was great. I went off of very little sleep. I’m running two businesses, I’m managing my household, I’m a wife. I’m staying busy. Bills are being paid. I am not consciously choosing good food. I’m getting those drive-through meals, because that’s what I have time for, stopping at the gas station when I get gas, eating at gas stations. I am using nicotine and caffeine.

I am using nicotine to de-stress. I am using caffeine to keep going. I am not watching salt intake, but yet I have this mindset that I’m great. I’m good. These things are being done, my family, my house, and the bills, my business, taken care of. I’m good. My health is good there, or until all of a sudden, it’s not. Those are my qualms that I had, that I used to get through the day.

VIVO: What were the symptoms you said you ignored prior to your diagnosis?

Interviewee: Weight gain, although I was active and busy, and I’m still gaining weight, also, I’m noticing that I’m retaining more water, and I’m tired. I’m not tired from a day, I am exhausted, short of breath. Getting closer and closer to the time that I was hospitalized and diagnosed, symptoms are getting worse and worse, to the point that I feel like I ate Thanksgiving dinner and I didn’t eat anything for the last three days, or I can’t get my rings on because I’m so swollen, or my ankles, I don’t see them anymore. I now have cankles.

VIVO: Were you aware of congestive heart failure and its risk factors before you were told you had that?

Interviewee: No, and it’s crazy. No. I heard of heart attacks. I’ve heard of high blood pressure, and that’s another thing I should add. I’ve always had high blood pressure since my mid-twenties, but I thought, well, that’s how I roll. I’m a high pressure person. I thought, I didn’t understand what high blood pressure was or how it affected me, and therefore didn’t control it.

VIVO: Did you know of any general preventive measures that you maybe took or didn’t take, or health screenings, in regards to heart disease?

Interviewee: Well, when I did my yearly checkup, I was told that my blood pressure was high, but it was okay. Maybe my doctor said something like more exercise. I guess I didn’t pay attention. I knew I had heard of, yes, women can have heart attacks. Yes, women can have high blood pressure, high cholesterol, which I don’t have high cholesterol. That’s not how my heart disease happened. Again, it goes back down to that I’m busy, my life looks fine on the surface, it’s going fine.

I feel fine until I didn’t all of a sudden, where those kinds of things were for other people. It’s selfish in a way to think that you have all these things, like you’re watching TV, and you get the Heart Association doing a commercial of showing a woman that’s living the same life I am, and suddenly, she’s not. Well, I was maybe ignorance is bliss attitude, and it caught up with me.

I hope that answers your question in some way. I didn’t pay attention to the now. It was something maybe for later, somebody else.

VIVO: What about exercise? Were you able to find time for any physical activities in the midst of work and kids, all of that?

Interviewee: Well, I tried. I joined a gym, but I decided, because I know best, that me running around working after my kids, and running here and there, and my hobbies, which include rock hounding, so I’m out walking in fields, and looking for gems and minerals, and hiking, that this was exercise, that this was going to be the component instead of this gym membership.

VIVO: Let’s go into the diagnosis you received. Can you share that experience with me of how you received the diagnosis and what the day looked like?

Interviewee: Probably every day for, I would say prior, I’d say a good four weeks, every day or few days, something was getting worse or worse to the point that I was tired.

I was getting everything, I honestly thought these were menopausal symptoms. I still didn’t correlate any of it to heart disease, or high blood pressure, or any of it. I got to the point where I could not go into work. I was having such a… What made me decide to go in was at work, I have a flight of steps, which is about 50 steps that I take up. I could not do it. I could not without feeling dizzy and weak.

I’m like, “I got to go in, there’s something wrong.” Finally, it’s like, “Whew, there’s something wrong here.” I went in and it progressed quickly from there. There was panic in my doctor’s eyes, like, “Oh, my gosh, what is this woman doing?” My ejection fraction, my heart was at 19%. I was admitted. Every kind of test was administered. I would say within 24 hours of my initial getting into the emergency room and being admitted, I was told that I had congestive heart failure with the ejection fraction of 19%.

VIVO: You said you went to an emergency room, that’s where you first went to?

Interviewee: Yep. Because of this time of day, the clinics were closed, I wasn’t going to get a doctor’s appointment, and it was hard to breathe.

VIVO: Do you remember any of the feelings you experienced while you were there waiting for the test results within that 24 hour period before you got the results?

Interviewee: Yeah, I do. I still… Curious, I was curious what is going on. My feeling is to be attentive. My feelings were also a bit nervousness, because well, this isn’t menopause anymore. What could this be? I wasn’t worried, but I was nervous. I had anxiety, I was feeling suspenseful.¬†

VIVO: What about when you received the actual diagnosis? Maybe tell me about how you reacted, but also I’d love to hear the top three or four feelings that you experienced within that timeframe.

Interviewee: Right. I am laying in a hospital bed, IVs in, pressure things on my legs. I have a doctor come in, and I was told what I have. I think that it went in one ear and out the other, because I didn’t know what it was, except I heard heart failure. I kind of went into this almost shock, where you heard it but you don’t understand it, and you can’t wrap your mind around it, because you’re unfamiliar with it.

Then everything said after that I didn’t hear, because I heard a word that scared the crap out of me, and I shut down. Until I could grasp what I heard was maybe a few hours later until I could ask questions that were probably answers already told to me. Like I said, I didn’t hear anything after that. That’s emotionally, you go into a shock, almost, a numbness, fight or flight.

VIVO: Did receiving this diagnosis change how you view yourself?

Interviewee: Hands down.

VIVO: Tell me about that.

Interviewee: As a woman that thought she had it all together, boy, did I feel like a big failure. Once I figured out how this all happens, I feel that there’s so many things I could have done differently. Hindsight, I know it’s 2020, so you have to take that with a grain of salt, and you have to pick up your shattered pieces where you are, and pick them up and mold them back together best you can, and hopefully stronger.

You are, you’re like this solid piece of glass, you get shattered, you’re sitting there with all your pieces on the ground, and you’re picking them up, hoping you can put them back together stronger and better, but yet you still have all these cracks. That’s the best analogy I can give you as to how it all went.

VIVO: It’s a beautiful analogy. Wow. Tell me about what that did for your day to day. You had a lot going on in your life. How did this change your routine, your day-to-day activities?

Interviewee: I think initially, I became depressed, and until I could sort things out and get, because knowledge is power, so I dove in, everything I could learn about what I was diagnosed, medicines, treatments, other people’s stories, groups, anything I could get my hands on to gain knowledge about my diagnosis helped pick me up, move me out of that depression, and was motivational. Therefore, I was able to, I guess taking those steps and learning knowledge is a movement forward, no matter the pace, forward is forward.

I was taking it right away, even being depressed, but to the point where I’m like, “I got this.” There’s still, you’re going to get those curveballs, but you have to get that mindset, I did, where I’m going to survive this. Failure my ass. You know what I mean? You want to bet?

VIVO: Exactly. Well, as you were going through that journey, when and what changes did you start making to lifestyle responsibilities, any of that?

Interviewee: Well, some of them were immediate, straight away from out of the hospital. I was there for five days, therefore not smoking, using a patch, and I went with it, continued that. Then you have to find a different way in which to handle that stress, because mine was a cigarette. You’re finding different ways to cope with stress. For me, that was going online and figuring out how to meditate, what practices can people use.

There’s a whole slew of them. You can go exercising, walking, yoga. I did Tai Chi. There’s that. Then there’s things that, I think managing stress was huge. Being able to say no took time and practice. Then the hardest part of all of it comes down to the food that we have in this country, and the sodium, the amount of sodium.

It’s hard to change your diet, especially having a husband, children. You’ve been raised to cook this way. That is still, it took a long time to get everybody on board for that. That is still a struggle. It is. It’s the most difficult. The food is difficult still.

VIVO: Did you feel like you had support from anyone during that time to make those changes? That’s a lot of changes to make in one time.

Interviewee: Yeah. No, I had support wholeheartedly, but that doesn’t come without whining and complaining from all of us.

VIVO: Who would you say were your primary support people?

Interviewee: Immediate family, from my mother to my mother and father in law, in laws, and my children. For me, there is no greater love, there’s no greater reason to find happiness and be healthy than for my children, and then hopefully one day, my grandchildren. That’s where my sustenance comes from is that, my support, and the same, me for them.

VIVO: What kind of changes did you make maybe regarding work, regarding did it affect your finances? Any kind of factors like that that are almost secondary to immediate health that were impacted?

Interviewee: Financially, it’s a blow. Having to take work off, and eating healthy is more expensive. Having to take work off financially, it was darn near devastating with medical bills and medicines, because now, and that’s another change too is all of a sudden, you’re popping pills. You’re like, you have this routine of medicine now that you have to stick to.

Sometimes I look at these pills and I’m like, “Oh, my gosh, this is what’s keeping me alive.” That’s a disheartening feeling as well. There’s big changes in every aspect: financially, work, lifestyle.

VIVO: What else were you managing on a day-to-day basis? You said medications, were there more frequent doctor visits, anything else?

Interviewee: There are, there’s not only a primary doctor, now you have a specialist. You have more traveling to do to go find these specialists, and their specialized tests that they take, and waiting on results, so there’s always a bit of anxiety involved. You have to ask for help. Being a very strong, independent woman that has a hell a time asking for help is something that is pulling teeth to do.

There’s a lot of changes that come along with poor health, and I imagine with any kind or any accident or anybody that’s one day, thinking they’re fine, and then next day, they’re not.

VIVO: What role did being in a more remote location play in all of this?

Interviewee: I’m going to say that most of my life, I thought it, a small town is everything you hear. Everybody knows everything. It’s so annoying. They know this, they know that. It’s never good. It’s gossipy, and it’s never good gossipy, but I will give it this: when you do not feel good, when something happens in a small town, people come together. You’re not ignored. People got your back. They know, well, they think they know your story, but the good in them comes out more times than not.

I know my neighbors, I’ve known them my whole life. I know them. I know all about them, “know about them.” It’s a blessing.

VIVO: Did it impact your access to healthcare? Did that hinder you at all?

Interviewee: It didn’t because I have a vehicle, a license. I have supports where if I would have to… Nothing is immediate. There’s always a drive, but I look at it like this, if I have to drive 40 miles to go see my specialist, well, that length of time to drive that is going to take about the same amount of time as it’s going to take to go three city blocks in our cities.

I might be traveling distance longer, but time-wise, it’s about the same. We have good doctors in rural areas. I think they’re as well experienced and knowledgeable.

VIVO: Any other challenges you want to share about managing your health now?

Interviewee: It was challenging setting realistic goals.

VIVO: Tell me about that. 

Interviewee: There’s all types of people, people that dive in head first and try to take everything on, people that take it slow, but there’s very specific things that work alongside each other that for one thing to flow, the other has to be done. To make a realistic goal that I’m going to take these meds, I’m going to say no when I have, you have to become real with yourself and what’s possible, so that one, you’re not let down so that it is obtainable. Managing realistic goals was important for me.

VIVO: How is this diagnosis, is or has it impacting your emotional well-being?

Interviewee: I think with anything that is chronic and uncurable, is going to… Because it’s manageable, you can live a life with less pain and suffering, but it’s what’s going to take my life. It’s going to kill me. That kind of knowledge, which a person never, I never walked through life thinking about things like that, can put you in your place, for lack of better words, smack you back into reality, right?

Where you want to take hold on and do your best, be your best, love instead of hate, be compassionate instead of judgmental. I think that you can take something like this and be knocked down and wiped out, and be a crab apple about it, or you can find positive things about it, and continue moving through life with a positive attitude, with a positive outlook, trying to do better, and loving more every day. That’s my take on this experience.

VIVO: Do you think there’s anything unique about your experience as a female that is worth talking about?

Interviewee: Maybe. Worth talking about? I’m not so sure. I think that it’s unique. I think that the way that a person reacts is unique, not so much based on their social status, their gender, their location. In each of those things, you have a multitude type of people and reactions. I think what it comes down to is your characteristics, your behaviors, and the way an individual is going to move forward.

VIVO: Has there been anything socially that’s changed for you? Types of engagements you go to, how frequently you’re socializing, anything like that that’s varied?

Interviewee: Yeah, and this is a part that ties back to those realistic goals, because I’m not out coaching my daughter’s softball team. Socially, I’m not out partying it up at the wedding afterwards. There’s huge social changes. From a typical person looking on the outside looking in, it doesn’t look like there’s anything wrong with me.

You almost get this, you’re not living up to your potential you’re lazy. Socially, that makes it hard to go out into society when you’re being judged, and where I have to keep realistic goals. I have to keep realistic goals and manage those goals.

Socially, yes, my social life has changed. It has been affected by this for sure, from judgment to the things that I can do.

VIVO: Can you share with me a couple of those goals that you’ve talked about? You want manageable goals. What are a couple of your future goals for health and wellness?

Interviewee: To be able… My goal is to be a grandma. I want to be a grandma that takes her grandkids, spends time with them. To do that, I need to take my medicine. I need to say no. These are things that I need to manage to reach my goal. I want to go out in that cornfield and pick my rocks, gem, and minerals, so that I can add to my collection of rocks. I want to be a rock hounder. To do that, I need to do certain things. These are goals, these are dreams. This is things that I want to do to be happy in life, and without being set back by congestive heart failure.

VIVO: What advice would you give someone who has recently received a diagnosis of some type of heart disease?

Interviewee: That makes me want to cry, almost. I know. I don’t know why. Advice. I don’t know who it is from, and I know I mentioned it earlier, but I would tell somebody, “Hey, listen, forward is forward no matter the pace.”

You can jump in, you can dive in, you can crawl, you can scoot, you can hop, but if you’re going forward, hang in there. Keep moving forward.

VIVO: That is great advice. We could all stand to hear that. Is there anything else you’d like to share about your journey with heart disease, or anything that maybe I have failed to ask that you think is important to talk about?

Interviewee: No. No. I feel this went well, but I want to thank you for being an interviewer that was able to instill this comfortable confidence in me to be able to speak freely about it. Thank you as well. I appreciate that.

Participant Profile:

• Female heart disease patient diagnosed with congestive heart failure from Takotsubo Cardiomyopathy
• 48 years old, living in rural central Minnesota (town of ~1,000 people)
• Small business owner running two businesses
• Mother of three (two adult children, one still at home)
• Hobbies include making copper jewelry and rock hounding
• No prior awareness of heart disease risk factors despite having high blood pressure since mid-twenties
• Experienced crisis-driven diagnosis with ejection fraction of 19%
• Notable challenges: dietary changes, medication management, financial impact, balancing work responsibilities