The road to diagnosis: How to be insistent, persistent and consistent

Darthmouth Readmission Rates Show Scant PRogressBy Joan Jahnke, RN

First posted on Stanford’s Scope blog on February 14th, 2013

After 2 ½ years of seeking a definitive diagnosis for my heart disorder, my physician of 14 years told me, “You have been insistent, persistent and consistent each time you presented.” She smiled at me as she said this, and I accepted this compliment as a job well done.

I had been diagnosed with cardiac endothelium dysfunction. I considered the diagnosis a triumph of some sort: Standard tests don’t always identify the disease, and I had gone on quite the journey to identify the source of my problems.

From the beginning, I had stayed focused on my heart symptoms. When various specialists insisted on blaming other organs (gall bladder, uterus, lungs) for my chest pain, I was insistent that they were off target. As a cardiac nurse, I knew that the mounting conflicting test results were confusing, but I felt confident my heart was the issue. After all, I knew myself far better than anyone else could.

Within weeks of my symptom onset, I read an interview with Dr. George Sopko, a cardiologist at the National Institutes of Health, who said, “Women, pay attention to your heart symptoms.” And so, I did that. I began a very succinct journal documenting the timing, duration and quality of chest pain I was experiencing, and I also included what I did to relieve the symptoms. It presented a cause-and-effect pattern with details that supplemented my memory.

I persisted in my search for a definitive diagnosis for my symptoms. My sources were not anecdotal stories from Internet blogs, but instead were scientific papers funded by medical universities and research institutions. I copied medical articles, whose content and format would be most familiar to physicians. I sought out the opinions of medical friends and colleagues, and I approached my research from the perspective of a student – not that of an emotionally distraught woman whose quality of life was rapidly failing.

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