In closing, I would like to offer two personal observations related to emotions that go beyond the usual medical discussion of innovative medical procedures and pathbreaking drug therapies. Lots of empirical evidence speaks to the wider relevance of my issues to health. The first is the role of stress in elevating the chances of a heart attack and slowing recovery. This is not that complicated. I know from personal experience that we simply can and should learn to reduce the stress in our lives as an investment in good health. Second is the impact of human relationships. From the moment I arrived at a Croatian ICU, I believed I could and would get better. I was kept grounded with high morale by the constant reassuring presence of my wife, Mary Ellen, and by the loving support of our children, grandchildren, and close friends. These folks were a powerful driver in my survival and recovery. I’m not sending a Hallmark card here. I’m providing hard data you can take to the bank. Investment in people pays rich dividends!
The good news for Randy and me is that the excellent medical procedures and continuing care we received in the same Northern Virginia hospital, our healthy diets, our regular physical exercise, and our robust network of close family and friends have boosted our resilience and speeded our recovery, turning a brush with death into a wake-up call—a second chance for a long, active life with the people we love. We are still here to tell our stories. We are lucky guys, and we know it!
Randy Pherson made himself a proactive participant in the diagnosis and treatment of his condition and, ultimately, in saving his own life. This gripping story and the sound advice he offers are certain to help others take charge of their health care. We all should take his good advice to heart!
John Gannon
Former Chairman, US National Intelligence Council
Falls Church, Virginia
January 8, 2019
The sun was shining on a crisp day in March 2014 as I headed for a meeting at the State Department. After parking my car in a nearby garage and walking just a few blocks, I began having trouble breathing. Because I was a runner, I was perplexed to find myself out of breath. I rested for a few minutes and then proceeded to my meeting. That was Friday. On Monday, I went to see my doctor, who said, “I’m not sure what is wrong, but you need to go to the emergency room.” I told her I had some meetings later that day but could work in a visit on Tuesday. My doctor said, “No. I mean now, not tomorrow. We have two world-renowned hospitals within a few miles of my office. Pick one and drive there.”
I chose the hospital where my son was born, and it was a good decision. When I arrived at the emergency room later that morning, I waited for less than an hour. A nurse interviewed me, and the doctor decided to give me an EKG to check out my heart. The results came back quickly, and the cardiologist on call said,
“Your heart looks fine. Go home and rest.”
“No. I need to know what is wrong,” I responded.
The doctor took another look at my files, asked me some more questions, and said, “I really don’t see a problem; I am releasing you.”
“No,” I responded. “I will not leave until you can offer me some alternative hypotheses for what is wrong with me. I also want to discuss what assumptions you are making and whether they are valid.”
The cardiologist was not used to patients making such arguments, but realized he was talking to a career CIA analyst who had written books on critical thinking and Structured Analytic Techniques. So, he relented and admitted me for an exploratory procedure the next morning. He said I had “worn him down” to the point he would authorize the procedure despite a mild risk factor. He said he was “90 percent certain” they would find nothing wrong on Tuesday.
My wife came to visit and asked a nurse if she should arrange for my son to drive my car home. She was told by the nurse that the procedure was scheduled for late morning and that I should have no problem driving myself home later that afternoon because I would be awake during the entire procedure and could even watch it on a computer screen.
They did the procedure Tuesday morning, but I did not go home that day. Instead, I was scheduled for major surgery Wednesday morning. Because of that surgery, I am alive today.
Why This Book?
I was a victim of medical misdiagnosis, and I am in good company. According to a report issued in 2015 by the Institute of Medicine, an arm of the National Academy of Sciences, as many as twelve million Americans may be receiving erroneous or late diagnoses every year.1 This is far more than the estimated hundred thousand deaths per year attributed to errors in hospital treatment. Moreover, the error rate for diagnosing illnesses is likely to worsen as the diagnostic process and health care delivery become more complex.
I began my search for a diagnosis when I started having trouble breathing while running in 2010. It took five years before I finally got a diagnosis following my visit to the emergency room. Over that five-year period, I sought and received treatment from a dozen doctors representing six different specialties—all of whom failed to identify what was causing my problem. I asked many questions during that time and learned a lot about how poorly—and at times, how well—the medical care industry functions in the United States. I condensed these experiences into sixteen actions you can take to improve the quality of your health care:
• Five questions you should always ask your doctor.
• Five obstacles you should expect to encounter.
• Six tips for increasing your chances of getting a solid diagnosis and receiving timely treatment.
I was very lucky. My hope is that people will read this book and live to tell their stories because they applied some of the lessons I learned during my journey.
Design and Content
The book is organized into five chapters with an epilogue and appendices that provide step-by-step instructions for using the techniques:
• The first chapter tells my story, beginning with when I began to detect a serious problem and ending with my emergency hospitalization for major surgery.
• The next three chapters present the key lessons I learned over five years of seeking a diagnosis, learning the value of asking particular questions, anticipating obstacles, and taking advantage of tips.
• The last chapter reveals the correct diagnosis and why I am lucky enough to be here today to write this book.
• The epilogue emphasizes the need to be your own health care advocate.
• The appendices provide step-by-step instructions for how to use six structured techniques that can be applied to most health issues you are likely to confront in daily life.
Interspersed throughout the book are short anecdotes that offer both positive and negative illustrations of each lesson.
Most of the anecdotes were obtained from members of the “5 percent club”—or their close relatives. The 5 percent club is named for those who fall outside two standard deviations of a normal population:
• The lucky members of this club have experienced challenges in getting their conditions correctly diagnosed, took direct responsibility for dealing with their condition, and lived to tell the tale.
• The unlucky members—probably the majority—first tried the standard treatment. When that failed, they tried a second or third treatment. When that failed, they died without ever receiving the correct diagnosis and treatment.