Community Shares: The Unexpected Ways Heart Failure Changes Your Life

Learning to live with heart failure comes with a handful of surprises. Some of these surprises are challenging, while some of them can be rewarding.

To find out more about the unexpected ways this diagnosis changes lives, we reached out to followers of our Facebook page. We asked community members to fill in the blank: “I knew my life would change when I was diagnosed with heart failure. But what I did not realize was __________.”

More than 100 people commented. Here is what was shared.

How much fear would come with the diagnosis

One of the most common responses to the prompt was that many community members did not realize how scared they would be following their diagnosis.

For some people, this means fearing another heart attack. For others, thinking about disease progression is a source of worry. However, with time, it is common for this fear to lessen. Life does go on. Many people find ways to make peace with their heart failure diagnosis.

“That I would live in constant fear while trying to do things that were formally enjoyable and therapeutic.”

“My heartbeat scares me. It pounds so hard.”

“Mentally scared to death, fearing that I may have another heart attack.”

How much it would leave an emotional impact

Many in the heart failure community shared that they were surprised by the emotional toll their diagnosis takes on their lives. The stress and fear can be draining, leaving some folks feeling overwhelmed. When feeling overwhelmed, it can help to focus only on the next small thing you have to do. Challenges become easier when you focus on one thing at a time.

“It changed me emotionally.”

“Drained emotionally.”

“How it changed me emotionally.”

How much work it takes to stay healthy

For many people who answered the prompt, one of the bigger surprises was how much effort it takes to follow doctor’s orders and stay healthy. It takes a great deal of time and energy to change one’s diet, add more exercise into the week, remember to take medicine, and keep track of doctor appointments.

“How difficult it would be to change. I have to check my blood pressure every morning and get echograms every few months, blood tests often, and doctor appointments 2 to 3 times a month.”

“Being so drained just doing WHAT has to be done to take care of myself.”

“How much of a full-time job it is keeping all the ducks in a row: meds, diet, appts, exercise, etc.”

How it changed life for the better

So many in the community shared that having heart disease changed their lives for the better. They learned what in life mattered most to them. They got rid of relationships, jobs, and other commitments that were too stressful. Plus, they found that the many changes their doctor recommended improved their physical and emotional well-being.

“That by losing weight, taking my meds, eating healthily (Mediterranean diet is my choice), and following low-salt recipes, I am feeling fine and living well. There is hope! Do not give up.”

“How much it would change my outlook in my life. My stressful job was not good for me. Stressful relationships were not either. Anything stressful I cut out. I felt so much better health-wise after I did this.”

“It made me more grateful for life, and I am a much happier person!”

Thank you to everyone who shared. We appreciate hearing so many perspectives.