By Kathleen Hutchinson
11 Mar

I Never Knew Life Could Be Like This

Wednesday, March 11, 2015

I never knew life could be like this.

A life without shortness of breath, a feeling of actually getting air when taking in a deep breath, reaching my ideal body weight (albeit by default from congestive heart failure treatment and open heart surgery), and being able to exercise without being discouraged by my mind wanting to push harder and my body saying, “Uh, no, we’re not doing that.”

See, I was not educated about my congenital heart disease. I had corrective surgeries at the age of five until the age of nine; after that, all I knew was that I was “fixed” and to see a cardiologist every year.

Since developing congestive heart failure, which led to an implantable cardioverter defibrillator, an ablation and pulmonary valve replacement (PVR), I have learned more about cardiac disease and have joined online and offline support groups. As I read or listen to other people’s stories and struggles with CHD, the more I am surprised. I suppose I lived in a state of “ignorance is bliss,” until now.

I had my four corrective surgeries as a child then went about my business. I have lived a life of traveling, living alone, working full time, graduating from college, sometimes even working two jobs while going to school, completing 5k races and mud runs (by walking mostly), becoming SCUBA certified and more. Through it all I would breathe heavily, be short of breath and have to slow down—but I did it all with perseverance.

I believed that shortness of breath, heart palpitations and a racing heart was all a part of life with CHD and open heart surgery. Little did I know that it was not over. Little did I know that my pulmonary valve would disappear. Little did I know that I would have open heart surgery AGAIN. Little did I know that I would need special treatment for the REST OF MY LIFE.

As I read the stories, struggles and the lives of others with CHD, I cannot help but think to myself, “Wow, I am lucky.” Then I ask myself, “Had I known that I would have to have surgery later in life, had I known that living with CHD was a bigger deal than I thought, would I have lived my life differently?” I will never know.

Since my PVR in November, I feel better than ever. I never knew life could be like this. I am in cardiac rehab and I can breathe. I can take in a deep breath and actually get air when I’m on the treadmill, elliptical trainer or even walking the hills in the neighborhood. I have yet to experience any shortness of breath or gasping for air. Is this what a “normal” person (or a person without CHD) feels when they are exercising? Is this what it feels like to be “normal”? I wouldn’t know and every day it is a very strange concept for me to grasp. I feel I have been given a whole new life. It is like the reset button was pushed and I’ve been rebooted.

The realization that I am extremely fortunate is not lost on me. I hope there are more out there with the same, fortunate experience. It saddens me to read the stories of others and learn about the challenges they face in everyday life. I am so ignorant; I never realized how challenging and painful life could be with CHD. Thank goodness for the advances in technology, the tremendous amount of support available and an entire association dedicated to CHD. It may sound strange but I am glad that congenital heart disease is a “bigger deal” than I thought. Lives are saved, lives are longer and lives are stronger because it IS a big deal.


Add yours below.


The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.