Community Shares: Missing Life Before Heart Failure

A heart failure diagnosis brings many changes. Every aspect of life goes through reorganization. Many things are no longer feasible. While it is important to live in the here and now, it is normal to sometimes long for your life before your diagnosis.

Curious about what you miss most, we recently asked followers of our Facebook page: “Fill in the blank: I know I can’t go back in time before heart failure entered my life, but sometimes I really miss ___?”

By far, the most common regret shared is the loss of energy and stamina. You feel frustrated by the constant fatigue and yearn to do all you once could.

Working

Needing to leave the workforce before you were ready is hard for many of you. We heard the pain of giving up a career you loved to prioritize your health. A job often provides a sense of purpose. When it ends, there is a struggle to define who you are and what gives your life meaning without it. Working is also a social outlet. The loss of colleagues and camaraderie adds to the isolation that often comes with a chronic illness.

“Working a job!”

“Being a nurse OB. I loved it all and didn’t want to give it up so early. Working as an RN gave me an identity. Now I have had to redefine myself.”

“Teaching. I wasn’t ready to retire.”

Physical activity

Being able to get out and go is another profound loss many of you shared. Physical activity significantly reduces from what it was before diagnosis. Spontaneity for physically strenuous outings is a thing of the past. We heard how much you miss being active outdoors.

“Walking for miles and riding my bike.”

“Being able to take care of my horses, including walking to the barn.”

“Walking long distances! I used to walk 4 to 5 miles, 4 times a week! Now I try to walk half a mile, but at least I can still walk.”

“Kayaking by myself on Lake Tahoe. I have not been back in 4 years.”

“Skiing.”

Food

Living with heart failure often involves changes to your diet. Dietary changes mean eliminating foods high in fat, reducing sodium and sugar, and eating lots of whole grains, fruits, and vegetables. While these are good and necessary changes to make, sometimes you really miss certain foods.¹

“Big, greasy cheeseburgers.”

“Salt on my watermelon.”

“Not worrying about everything I eat.”

Life without meds

There is no doubt that the prescriptions and supplements doctors prescribe for managing heart failure are essential. They keep you healthy and your heart operating as well as possible. However, the sheer number of drugs and their necessity gets discouraging for many of you. You miss the time before when you were not dependent on so many pills, treatments, and taking them on a strict schedule.

“I miss not having to take all these meds or blood pressure.”

“I hate taking pills. Prevention is everything.”

“The days before all these fun prescriptions.”

Thank you

We are grateful to everyone willing to engage with our community and share the things you miss about life before diagnosis. We are glad you are part of Heart-Failure.net in this next chapter of your life.