So you have heart failure, and the type you have makes it hard for your heart to pump enough blood to the rest of your body (called heart failure with reduced ejection fraction, HFrEF, or systolic heart failure). Now what?

You probably feel scared and overwhelmed, and flooded with questions about your diagnosis. But you are not alone.

A team at the American College of Cardiology has created “I Have Heart Failure with Reduced Ejection Fraction. Now What?” to help you and your care team talk through and make informed decisions about the best first steps for managing your condition.

Heart failure requires ongoing monitoring and management. Treatment can help you feel better, live longer, and avoid hospital stays. That’s why it’s so important for you to take an active role in your care plan from the start.

Your Input Keeps Your Treatment On Track

Knowing how you feel and what to tell your care team can help you better manage your condition.

It’s often said that medicine is just as much of an art as a science. That applies to managing heart failure, too.

For example, if you have heart failure, your health care team relies on regular exams, bloodwork and imaging tests to help gauge how well—or poorly—your heart is pumping. Taken together, these tests can help show how well your treatment is working.

But there’s another essential piece of the puzzle when it comes to tailoring your treatment plan: your report of how you are faring from one day to the next. This includes what you can or can’t do because of your symptoms.

It’s Important to Speak Up

By telling your care team how you are doing at home and work, you help paint a more complete picture of how heart failure is affecting your life. You might also hear this called your quality of life. Like with your bloodwork or echocardiogram results, your health care professional ideally needs this input to help adjust your care plan.

Unfortunately, sometimes people don’t want to speak up or bother their health care professional, but your input is important. Your care team should know if your condition prevents you from fulfilling your goals, like traveling or going to special celebrations of life events.

How Do You Feel Each Day?

Listen to your body and take note of what activities are easy or hard for you to do from one day to the next. This is one of the best ways to tell how you—and your heart—are doing.

You might start by:

» Learning what a good day looks and feels like. What about a bad day?

When and how do you feel limited by your symptoms? Many people say they know their heart failure is getting worse when they feel very drained, zapped of energy or more easily out of breath even though they haven’t been doing very much.

This is different and separate from feeling tired after traveling or a big event, which is often expected with—and without—heart failure.

» Asking yourself a few questions.

Overall, how do I feel today? Be sure to share how you are doing both physically and emotionally.
Compared with a typical or average day with heart failure, today I feel:
Better
Worse
About the same
Different—In what way(s)?
What activities am I able to do, or not do, because of my heart failure?

» Watching for—and reporting—signs that your heart failure may be getting worse. If you know the signs, you can do something about them.

Knowing your body and reporting new or worsening symptoms when you first notice them can help you stay out of the hospital and avoid prolonged illness. Your input will also allow you and your care team make the best decisions about your treatment over time.

Call your care team if you experience:

Feeling short of breath or much more tired than usual, even with small bouts of activity
Any obvious swelling in your feet, ankle or legs or abdomen
Sudden weight gain, which can be a red flag that fluid is building up in your body
- Weigh yourself each morning before breakfast—the danger zone is gaining 3 pounds in a 24-hour period or 5 pounds or more in a week
Needing to sit upright in a chair or use pillows to prop yourself up to sleep or breath easier
A stubborn, dry cough

If you feel uneasy or know something is not quite right, speak up! Other people living with heart failure say it’s important to follow your gut.

Note Your Triggers

Many people living with heart failure have, over time, learned what can trigger a flare-up of their heart failure.

For example:

Eating a heavy meal
Not limiting salt (sodium) enough
Not taking medications as prescribed
Traveling, which some patients admit has led them to skip a diuretic (water pill) or forgo recording a daily weight
Not having other medical conditions under control (for example, diabetes, blockages in the arteries, atrial fibrillation)
Infections such as influenza, pneumonia or even a common cold
Feeling overly stressed, which can make sticking with your treatment plan more difficult
For some, drinking too much liquid; talk with your health care provider to see if this applies to you

Be sure to tell your health care team about these and other possible triggers. Together, you can talk through how to plan for and avoid things that might aggravate your heart failure. For example, you might need more information or nutritional counseling on limiting salt or perhaps annual reminders to get vaccines against the flu and pneumonia. Remember that many of these triggers are more likely to take place during the holidays, at special celebrations or when you are traveling.

Bumps in the Road

People often describe living with heart failure as a journey. They share that there will be bumps in the road, and to expect good days and bad ones. At times, it can feel pretty overwhelming, especially as you learn what’s needed to manage the disease well. At times you may feel like crying or yelling. That’s OK.

And if you do experience setbacks—for example, feeling badly or having to go to the hospital—don’t get discouraged.

It might help to remember that you are in the driver’s seat, but you’re also not alone. You can take steps mentioned in this article to feel more on top of your heart failure and make sure you feel supported.

Staying Upbeat

In talking with your health care team about how you’re feeling, don’t forget your emotional health and well-being. And remember that there is power in positive thinking.

Studies show that it helps to remain hopeful and stay connected with people and activities that you enjoy and give you a sense of purpose. Finding peers—other people who have your type of heart failure—with whom you can share tips and ask for advice can be super helpful and life-giving.

Although heart failure is part of your life, it does not define you. You may need to do things a little differently now. But you can live your life. Giving your health care team a glimpse into how heart failure may affect what you do and sharing your goals for treatment can help you along the way.