Living with heart disease can affect energy, breathing, activity, eating habits, and daily routines. Keeping up with medications, appointments, and tests can also be challenging, and worries about future heart problems can add to the stress.

Recently, we asked MyHeartDiseaseTeam members about their biggest challenge in managing their heart health. Their comments showed how physical symptoms and the emotional demands of heart disease often overlap.

Almost half of respondents chose managing symptoms, while about a third selected heart-healthy habits. Comments also highlighted unpredictable energy levels, the work involved in ongoing care, and the emotional effects of living with heart disease.

No two experiences with heart disease are the same. Your challenges may depend on your specific heart condition, other health concerns, and treatment. Your healthcare team can help you understand what steps and support may be appropriate for you. 

Members described fatigue, dizziness, shortness of breath, palpitations (noticeable heartbeats), and fainting. Symptoms can vary depending on the specific heart condition. For some members, symptoms changed from day to day, making it difficult to plan ahead or maintain an exercise routine.

One MyHeartDiseaseTeam member described how symptoms affected their ability to stay active: “The fatigue and shortness of breath have picked up over the last few weeks. I gave up tennis due to fatigue and dizziness and started a walking program. Unfortunately, I am experiencing inconsistency in my walking program.”

“The fatigue and shortness of breath have picked up over the last few weeks. I gave up tennis due to fatigue and dizziness and started a walking program.”

 

— A MyHeartDiseaseTeam member

Another member explained how several symptoms could occur together: “My symptoms got to the point where they would hit me all at the same time in a cascade like an eruption. Shortness of breath, dizziness, fatigue, incontinence, and palpitations.”

What May Help

If fatigue, breathlessness, or dizziness limits your activities, tell your heart care team. You might ask:

• What might be causing your symptoms
• Whether your treatment needs to be reviewed
• What level of physical activity is safe for you

Tracking when symptoms happen and what you’re doing at the time may help your care team identify patterns. If you experience fainting, seek prompt medical evaluation, as it can sometimes signal a serious heart problem.

More than a third of respondents chose food or exercise changes as their biggest challenge. Knowing which changes to make doesn’t always mean it’s easy to stick with them.

Members described difficulties staying motivated, avoiding certain foods, and finding ways to exercise when fatigue or other health conditions limited their activity.

One MyHeartDiseaseTeam member described trying to make several changes at once: “I am trying to stick to a plant-based diet and expand my varieties of fruits, vegetables, whole grains, legumes, and different kinds of healthy fluids. … I know that I should be walking more and getting more exercise, but I am having difficulty in finding the incentive to do so.”

“I am trying to stick to a plant-based diet. … I know that I should be … getting more exercise, but I am having difficulty in finding the incentive to do so.”

 

— A MyHeartDiseaseTeam member

Another member described a common challenge with food choices: “Had bypass surgery six years ago. I am doing very well but find it hard to avoid processed food.”

What May Help

If you’re struggling to maintain heart-healthy habits, ask your healthcare team which changes are most important for you. Heart-healthy eating patterns generally include:

• Vegetables and fruits
• Whole grains
• Healthy sources of protein
• Minimally processed foods

Your cardiologist or a registered dietitian may be able to help with food choices.

If heart disease makes exercise difficult, ask whether a supervised cardiac rehabilitation program might be appropriate. Rather than trying to change everything at once, you might discuss small, realistic goals that fit your health, abilities, and daily routine.

Around 10 percent of respondents selected keeping up with medications, tests, or appointments. Members described the effort involved in organizing medical information, preparing for tests, following medication routines, and attending frequent appointments. For some, ongoing monitoring was exhausting.

One MyHeartDiseaseTeam member described how managing care requires ongoing attention: “Medications, tests, appointments, and understanding ongoing proactive care require self-advocacy and hard work. Keeping information straight and updated is important.”

For another, the cumulative burden was difficult: “I am so tired of the constant monitoring and test after test. A day doesn’t go by when I don’t think of my heart problems.”

“I am so tired of the constant monitoring and test after test. A day doesn’t go by when I don’t think of my heart problems.”

 

— A MyHeartDiseaseTeam member

What May Help

If keeping track of your heart care feels overwhelming, ask your healthcare team about ways to stay organized. It may be helpful to:

• Maintain an up-to-date medication list
• Use appointment reminders
• Keep test results in one place

You can also ask your doctor why each test is needed and what it checks for.

If you see several specialists, ask who is coordinating your care and how they share information. A pharmacist can help you understand your medications and answer questions about taking them safely.

The “something else” comments highlighted the emotional side of living with heart disease. Members described anxiety, depression, grief over changes in their lives, and fear of future heart problems. These feelings could continue even when members followed their treatment plans and made healthy changes.

One MyHeartDiseaseTeam member described the emotional challenges of recovering from open-heart surgery: “Anxiety, grief, depression. This process of recovery is slow and frustrating. I want my ‘self’ back.”

“This process of recovery is slow and frustrating. I want my ‘self’ back.”

 

— A MyHeartDiseaseTeam member

Another member described an ongoing fear despite efforts to protect their health: “Knowing, at the back of the mind, that despite doing my best to eat healthily, take lots of exercise, manage stress, and educating myself, a heart attack may happen again at any time.”

What May Help

If anxiety, sadness, or fear about your heart health affects your daily life, let your healthcare team know. Ask about counseling, mental health support, or programs for people recovering from heart problems.

Connecting with others who have experienced heart disease may also help. Support groups, including online communities, can provide opportunities to share concerns and learn how others cope with uncertainty and life changes.