Community Views: Creatively Explaining Heart Failure
Last updated: September 2023
A diagnosis of heart failure can be tough. It may be hard for someone on the outside to truly understand the realities of living with this condition.
To help paint an accurate picture of what it is like to have heart failure, we asked community members to respond to this prompt on the Heart-Failure.net Facebook page: "Tell us you have heart failure without saying you have heart failure…"
This prompt struck a chord with community members! With hundreds of responses, we admired your creativity and willingness to share.
You are exhausted
A large number of community members said their heart failure causes them to feel tired or worn out most of the time. Even simple tasks can wear you out for hours, if not the entire day. You find that you need plenty of rest each and every day.
"Fatigue, fatigue, fatigue."
"I'm tired, not lazy!"
"Let's NOT go running together. Woot!"
"I have no ambition to do the things I want to do around the house."
"My get up and go got up and went."
"I'm tired from when I wake up until I go to bed at night."
"I vacuumed the carpet. I'm exhausted."
Breathing is a chore
Shortness of breath is a common yet frustrating symptom of heart failure. Some people with heart failure feel out of breath while moving around, while others cough and gasp for air even when they are at rest. It can be scary to feel like you are constantly struggling to get the air you need.
"Shortness of breath feels like drowning."
"Anything I do kind of takes my breath."
"Consistent cough, irregular breathing."
"I breathe underwater with a tight belt around my chest."
"Sometimes breathing seems like I'm drowning."
"I just can't breathe anymore."
Your diet has changed
After you were diagnosed with heart failure, your doctor probably talked to you about changing your diet. You may have had to cut out meat or dairy, and salt is no longer your friend. This can make it difficult to eat at a restaurant or accept a dinner invite at a friend's house.
"Hold the salt."
"If it's good, I probably shouldn't be eating it."
You feel swollen all the time
Many people with heart failure are all too familiar with swelling, especially in the lower legs and feet. Swelling can hurt and even make your shoes and socks feel tight. At the end of the day, all you want to do is put your feet up.
"Legs swell, then I feel like an elephant when trying to walk."
"Fluid retention all throughout the day."
"Legs and feet swell."
"Pick up 3 to 5 pounds a day, then lose it by night."
Your medicine cabinet is full
A daily routine with lots of different medicines is part of your life with heart failure. You have to keep track of the right timing and dosing, which can be difficult. It can be shocking to see the number of prescription bottles lined up in your medicine cabinet.
"My heart is broken. Slowly healing with medicines."
"I take 5 different heart meds."
Thank you to everyone who shared responses and insights into life with heart failure. It can be hard for others to understand the realities of living with this condition. We appreciate that you are part of this community.
Have you experienced shortness of breath in the last week?