Johns Hopkins writing professor and veteran health journalist, Mary Knudson, has been at the forefront of the sci/med blogosphere as of late. Here at PLoS blogs, Mary wrote a guest post at Deborah Blum’s Speakeasy Science about pulling her new blog from US News & World Report on its first day due to unanticipated advertising infiltration of her content.
Mary’s blog, Heart Sense, was to have spoken to the issues face by patients diagnosed with heart failure, a condition that she began to face personally about seven years ago. Serendipitously, I had the pleasure of visiting with Mary two weeks ago and speaking with Dr. Val Jones of Getting Better Health and oncologist Dr. Robert Miller of the ASCO Connection blogs at her Johns Hopkins School of Medicine Faculty Development Class, Writing Health Stories for the Public.
At dinner afterward, Mary told Val and I her long story of diagnosis with heart failure and the surprisingly long period of mismanagement of her condition by several medical teams. As my jaw dragged across my plate of Baltimore crabcakes (yes, backfin meat is tough to get out of a goatee), I couldn’t believe that an experienced health writer went through such an ordeal – I also couldn’t help imagining how many others with less health care experience might be similarly mismanaged for even longer.
The culmination of Mary’s experience with heart failure was co-authoring a book with the cardiologist, Dr. Ed Kasper, who finally treated her according to national guidelines of the American College of Cardiology and the American Heart Association. The book is aptly titled, Living Well With Heart Failure: The Misnamed, Misunderstood Condition.
Mary’s account of her journey with heart failure as told to Val and me was intensely personal and, obviously, painful to revisit. So, I was awed yesterday to see Mary launch her new blog, HeartSense, with that very story.
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.
Go read. And thank you, Mary, for sharing your story. Your example and advice will certainly keep others from experiencing the same fear and confusion.