Through surveys, Q&As, and discussion threads on MyHeartDiseaseTeam, members have shared their insights into life with heart disease. Many members describe their symptoms, outlook, and concerns related to their condition. With new members joining MyHeartDiseaseTeam every day, these discussions become increasingly detailed and revealing.

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In a survey of 233 members of MyHeartDiseaseTeam, people shared their thoughts and feelings about life with heart disease. Here, we take a deeper look at those results and discuss members’ thoughts about their quality of life and well-being.

Almost Half of Survey Respondents Have Had a Heart Attack

Heart attacks are life-threatening events that occur when your heart doesn’t get the blood supply it needs. This can happen because of a blockage or any reduction in blood flow to the heart muscle.

Heart attacks are common. Every 40 seconds, someone in the United States has one. Forty-seven percent of MyHeartDiseaseTeam survey respondents have had one.

Although many people survive and recover, heart attacks can do lasting damage to the heart and its blood vessels. This leaves some MyHeartDiseaseTeam members feeling hesitant about activities like exercise, especially when exercise triggers angina (chest pain).

70% of Respondents Have Trouble Exercising

Around 70 percent of survey respondents said they’d experienced difficulty exercising. Exercise is an important part of keeping your heart healthy and maintaining a healthy weight, but it’s possible to overdo it when you have heart problems.

“I’ve had open heart bypass surgery and still am clueless as to what needs to be done. I purchased a stationary bike, but I’m afraid. I’m out of breath doing normal chores. Imagine riding a bike or walking far. I’ve got to start something!” said one member.

“I purchased a stationary bike, but I’m afraid. I’m out of breath doing normal chores. Imagine riding a bike or walking far.”

— A MyHeartDiseaseTeam member

Another shared, “My doctor wants me to do aerobic exercise daily. I haven’t been able to do more than 2.5 minutes without getting shortness of breath and chest pain.”

Always talk to your doctor about how much physical activity you or your loved one can safely do with cardiovascular disease, especially after a heart attack.

Over Three-Quarters of Respondents Have Fatigue

Fatigue is also commonly reported among MyHeartDiseaseTeam members, with 76 percent of survey respondents saying they’ve experienced it.

Fatigue is one of the most common heart failure symptoms. It was the top-reported heart disease symptom in the survey, followed by shortness of breath. Fatigue greatly impacts members’ quality of life:

• “I have fatigue that hits like a ton of bricks when it comes. It doesn’t happen daily. I can’t function, usually sleep an hour or so, wake with irregular heartbeats and blood pressure that varies.”
• “I seem to always be fighting fatigue. Today is one of the many days in the last weeks that I feel like I have little to no energy completing daily tasks.”
• “I stay tired ALL day long.”
• “Some days with heart disease are just not the best! Fatigue and exhaustion take over, and you push and push and then collapse on the couch!”
• “I’m tired all the time but have trouble sleeping at night.”

Despite this fatigue, 57 percent of survey respondents said they find it hard to sleep at night.

Over Half of Respondents Have Concerns About Their Heart Disease Treatment

With 56 percent of survey respondents saying they’re not satisfied or are only somewhat satisfied with their heart disease care, it’s clear that concerns are common when it comes to heart disease treatment. Here’s what members say they want most from their healthcare providers.

“All I want is honest answers. Good, bad, or ugly. Just give me the truth.”

— A MyHeartDiseaseTeam member

More Information

When asked what they wanted most from their doctors, 22 percent of survey respondents said they wanted more information, especially about recommended healthy lifestyle changes. Competency and knowledge are among the main reasons for positive online reviews for cardiologists, which reflects this desire among MyHeartDiseaseTeam members.

“All I want is honest answers. Good, bad, or ugly. Just give me the truth,” wrote one member.

Another member described feeling conflicted between wanting to know more and fearing harsh truths: “One thing I have found, most doctors and nurses have compassionate hearts and have trouble telling a patient how dire their situation is. I respect this. In younger years, I wanted to be informed on everything that concerned me, but now I am not so sure I want to know every detail.”

Listening and Understanding

Another 22 percent of survey respondents said they wanted their healthcare providers to listen more and communicate more understanding. Empathy, positive interactions, and thoroughness are commonly cited in positive online reviews for cardiologists and their staff.

“I want a doctor who listens to me and takes me seriously. One that’s there to truly help give me a good quality of life.”

— A MyHeartDiseaseTeam member

“Answer my questions, remember I am NOT a computer. I am a human being sitting in front of the doctor,” stated one member regarding interactions with their doctor.

Another said, “I want a doctor who listens to me and takes me seriously. One that’s there to truly help give me a good quality of life.”

Another member expressed frustration about feeling like their concerns went unheard: “I have gained weight, am tired most of the day, and depressed. No doctor gets it. They attribute everything I feel and fear to my post-traumatic stress disorder.”

More Time

Around 18 percent of survey respondents said more time with their doctor was a priority.

According to the American College of Cardiology, cardiovascular providers are under extra strain due to a shortage of providers and an aging population with increasing heart health needs. This might be a reason why some members feel like they don’t get enough time with their doctors.

New Treatments

Just 8 percent of survey respondents said what they wanted most from their doctors was new treatments. However, around 56 percent reported being less than satisfied with their current treatments.

“Sometimes a doctor presents us with several options in our course of treatment. When you choose an option, have you ever second-guessed yourself and asked, ‘Am I doing the right thing?’” a MyHeartDiseaseTeam member asked.

“I guess we all have second thoughts about what is right for us, but we have to trust our doctor’s decision for now, or get a second opinion from other doctors that truly specialize in the field of our health issues to be sure we are getting the right treatments,” responded another member.

Join the Conversation

On MyHeartDiseaseTeam, people share their experiences with heart disease, get advice, and find support from others who understand.

What are your top concerns about living with heart disease? Let others know in the comments below.