My Journey with Heart Failure

I got to know something about heart failure the hard way, by having it. I also happen to be a health journalist. So when I got the stunning diagnosis in 2003, I began researching this condition that sounded so fatal. Not only was my diagnosis overwhelming, but my first encounters with the health care system were dismal. It took me three and a half months to find good care. My story is worth sharing because it illustrates how important it can be for a patient to become knowledgeable about an illness and get involved in her own treatment plan.


Heart failure is a condition in which the heart can no longer perform well enough to get adequate blood and oxygen to the body. With 6 million people living with heart failure in the United States alone, it is already a huge medical problem and will get bigger as baby boomers continue to hit their fifties and sixties. Heart failure is a serious condition that can be fatal, but I would learn that it often can be managed with the right treatments. My own research about heart failure changed my life.


In December, 2002, I found myself getting fatigued and easily out of breath, with swollen ankles and abdomen. My asthma was normally under control, but I turned to my asthma specialist because of the shortness of breath. He noticed my swollen ankles and said he didn’t think my problem was asthma. I had begun to think the same thing. He told me to see my internist right away who referred me to a cardiologist who gave me a diagnosis in words that roll off the tongue of a heart specialist but shock the patient who hears them: “idiopathic dilated cardiomyopathy and biventricular congestive heart failure.” It was those last two words that got my attention.

Read the full article at HeartSense Blog




Mary Knudson is a health journalist who is co-author of Living Well with Heart Failure, the Misnamed, Misunderstood Condition and teaches health and science writing at Johns Hopkins University. She is co-editor of A Field Guide for Science Writers and was a journalism fellow at the Harvard School of Public Health.