How Congenital Heart Defects Make It Difficult to Exercise


At the top of many people’s New Year’s resolutions is to lose weight, join a gym, work out X amount of times a week. For someone with congenital heart defects, that just isn’t possible. One of the biggest hardships I face is the fact that weight just does not fall off me; part of the reason is due to my edema.

Edema is a medical term for swelling or retaining fluid. In any given day, I can take my fluid pill and lose between five and seven pounds in fluid. It’s wild to think about. Working out and doing your typical exercises isn’t as easy as it sounds simply because, due to the different anatomy and construction of my heart and the numerous other complications that ensue from congenital heart defects, I am limited in what I can and can’t do. I would love to be able to lose weight but with edema, your weight fluctuates a lot.

Breathing. Breathing is a very important part of life and when I am retaining fluid in my chest and abdomen, my lungs cannot expand the way they should and carrying around the extra “water weight” is exhausting. When my lungs cannot expand the way they should due to the lack of oxygen and decreased circulation, it makes me short of breath which leads to extra fatigue which in turn, makes it near impossible for me to do anything for any extended period of time.

When I am retaining fluid (which is almost every day), my “normal” size jeans do not even button and I am forced to wear jeans several sizes larger just to accommodate the extra fluid. I tried cardiac rehab for a while three times a week; I never fully recovered after each session, or at least it felt that way. The hour of exercise, even just walking, peddling, etc., made me feel like I had tried to run a marathon with 50-lb. weights attached to me. I would come home and just crash.

With my particular defect and the complications I am currently having and my pulmonary valve leaking, my oxygen saturations are in the 80s daily. Most “normal” people (including my husband who is a smoker) have oxygen saturation’s in the high 90s.

My goal this year is to be more active and do things I can do like using an exercise bike and swimming. You have to be aware of your limits and be aware of how your body is responding. It’s fine to make goals but be sure you know how to achieve them in a way that works for you. Make sure you make realistic goals. Don’t say you are going to run a marathon if you know there is no way your body can handle it. It’s all about baby steps and working towards your goal and building your way up to where you need to be. Accept when you cannot do something, it isn’t about being like everyone else.

My hope is that once I have my next heart cath done, I will be able to work out a little more, lose a little weight and not be as exhausted.

Stay creative and battle on.

This post originally appeared on The Creative Heart Warrior.

We want to hear your story. Become a Mighty contributor here.

Photo via lzf on Getty Images


Find this story helpful? Share it with someone you care about.