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.
This book contends that people who experience medical problems and recover fall within two standard deviations, or 95 percent, of the area under a standard bell curve (see Figure 1). This is because they self-heal or two or three common treatments cure the problem. However, 5 percent of the population may have more complicated issues, requiring a more thorough diagnosis.
Figure 1. Calculating Two Standard Deviations on a Standard Bell Curve
The thesis of my book is that far more people in this second group would have lived if they had adopted the advice contained in the chapters that follow. I offer this thesis as a hypothesis to be tested and validated or disproved by those much more proficient in medical research.
Disclaimers
My goal in writing this book is to provide a positive—and useful—narrative that will help save people’s lives. The intent is to be analytic and not accusatory. I simply want to offer helpful advice. For that reason, I do not refer to any doctors by name, nor do I identify any specific hospitals, medical practices, or facilities.
This is a personal story. Conclusions are presented as testable hypotheses, not proven facts. The author would greatly appreciate any effort by those in academia or the medical profession to document the author’s findings and, specifically, to offer additional evidence that would validate—or invalidate—his assumptions regarding patient diagnosis.
The book does not constitute an official release of Central Intelligence Agency (CIA) information. All statements of fact, opinion, or analysis expressed are those of the author and do not reflect the official positions or views of the CIA or any other US government agency. Nothing in the contents should be construed as asserting or implying US government authentication of information or CIA endorsement of the author’s views. This material has been reviewed solely for classification.
Acknowledgments
This book has benefited from the contributions of many who have agreed to share their experiences in trying—both successfully and unsuccessfully—to navigate the challenges and peculiarities of the American medical system, including Maryam Allahyar, Kirsti Garlock, Polly Jones, Pamela Noe, Mary O’Sullivan, Kathy Pherson, Kirk Rutherford, Diane Sievers, and Lynda Warren. They would prefer to share their stories anonymously for inclusion in the book, and I have honored that wish, assigning fictitious names to each anecdote. Many also offered valuable advice on how to better focus my story. In addition, I would like to thank Dr. Douglas Boyink, Leanne Cotten, Dr. Mary Edwardson, Cherie Lawson-Shanks, Kristine Leach, Richard Pherson, Danielle Rickard, Dr. Mitchell Ross, and Marie Strassburger for helping me conceptualize the storyline and for providing comments on versions of the manuscript.
For thirty-five years, I have belonged to a club that runs five miles cross-country over new territory once a week. Thirty to forty of us gather each week without fail. Since joining the club, I have completed over 1,350 five-mile runs. I also ran five Marine Corps Marathons in Washington, DC, recording a best time of three hours and forty-five minutes.
For the first twenty-five years, I had little difficulty keeping up with the pack. Beginning in 2008, however, I started to slow down. I found myself trailing behind. Soon it became obvious that I had become a solid member of an elite group our club calls the “Big behind.”
By 2009, I had become frustrated. After running twenty to thirty minutes, I found that my lungs would start to ache. I had to walk to catch my breath before resuming the run. It felt like my lungs could take in only a certain amount of oxygen, and I was forcing them to do more than they could manage. If I pushed too hard, trying to “run through the problem,” I would feel a little numbness in my fingers and a slight ache in my upper chest—but nothing serious.
Self-Diagnosis
Could I simply be out of shape? I exercised six days a week. My routine was to run once a week, use an elliptical trainer twice a week (pushing my heart rate to 120–130), and lift weights for forty-five minutes the other three days. I also thought the problem might be that I was overweight. I continued exercising, reduced my food intake, and lost fifteen pounds. Unfortunately, none of these actions made any difference.
I mentioned my frustrations to my family doctor, and we speculated on what could be the problem. Northern Virginia has a high incidence of people with asthma and allergies, so I wondered if that could be the issue. Seasonal allergies were an unlikely cause because my breathing problems were not related to the time of year. I travel frequently and usually enjoy an early morning run in the various cities I visit. In recent years, I had stopped running outside when traveling because running was becoming too strenuous for me.
Is It My Heart?
In 2010, my family doctor and I decided to take more aggressive action. She arranged in February for me to undergo a cardiac treadmill stress test with radioactive fluids to observe the condition of my heart. I underwent testing at a highly credentialed hospital in Northern Virginia with a sterling reputation for dealing with heart disease. A team of three cardiologists
