Community Shares: Did Your Heart Failure Diagnosis Come as a Surprise?

In the moment of learning that you have heart failure, a range of emotions often follows. For some people, it may include shock and fear. Others might feel relief and validation.

To find out more about whether community members felt caught off-guard by their diagnosis or whether they anticipated it, we reached out to followers of our Facebook page. We asked members to tell us:“Did your heart failure come as a surprise to you?”

More than 150 people answered, and here is what was shared.

Totally unexpected

For many in the community, the first time they learned they had a heart problem of any kind was when their doctor told them they had heart failure. There were no signs before their diagnosis, so it was totally unexpected. Plus, many shared that their doctor had originally diagnosed them with a completely different condition, such as pneumonia. This made their heart failure diagnosis that much more of a surprise.

“Yes, my heart murmur surprised me.”

“Yes, it was a big shock.”

“Totally. I was very active and working. Always on the go. My grandson had a hard time keeping up with me. Now, I have no energy and am always out of breath and tired.”

“I was an athlete my whole life and in great shape, then suddenly I began to have heart issues. I am now a survivor of 8 heart attacks and 24 stents. The point is to never give up!”

Surprising

Most people do not want to believe that they are experiencing serious heart problems, even if there are signs or symptoms pointing to the fact that there might be a problem. We still hope we can avoid a condition like heart failure, which means that when a diagnosis is given it can still come as a shock.

“Yes, but I suspected it, as I had swelling in the ankles for several years. I questioned the reason and was just given meds to help flush. It was still scary to finally get a diagnosis.”

“Yes, even though both parents had heart problems. I had been mindful and took steps that I had hoped would help prevent. No smoking, no drinking, and I followed a pretty healthy diet.”

Previous cardiac events

Many in the community shared that they were not surprised by their heart failure diagnosis since they had already been to the doctor for a heart problem. For some, that problem was as serious as a myocardial infarction (a heart attack), while for others it was a different type of heart condition. Unfortunately, these prior experiences prepared people for their heart failure diagnosis.

“No. Having had a myocardial infarction at age 20 and AFib most of my life, then a massive myocardial infarction at age 48, I fully expected it.”

“No. I was diagnosed with cardiomyopathy at 35.”

Genetic factors

If you watched a parent or other close family member live with heart failure, you are all too familiar with how this diagnosis impacts physical, mental, and emotional health. Your family history of heart failure may also mean that your own diagnosis was not a surprise to you. Though there are many different factors that can lead to heart failure, research shows that genetics do play a role. Learning about and sharing your family history of heart problems with your doctor can be an important way to protect your heart.¹

“No. Both of my parents passed from heart failure.”

“No. My father died of heart failure.”

Thank everyone who shared. Your experiences help other community members get a wide and varied picture of what it is like to find out about heart failure.