When a doctor becomes the patient
Even with the education and experience Kevin Anderson had as a practicing physician, he couldn't understand what was wrong with him. By 2008, what he did know was that the stairs he used every day as a measure of his fitness had become, inexplicably, more and more of a challenge in the previous two years.
He had seen a cardiologist who had determined that the right side of Anderson's heart had some problems, but the day that Anderson, still in his 40s, nearly fell down after climbing just one flight of stairs was the day he knew something was really wrong. Finally, an echocardiogram, a test that measures heart function, conducted about 18 months after his first, now showed his heart had thickened. The tissue of the muscle had changed drastically, so much so that a heart transplant might be required.
Now, Anderson would hear the word amyloidosis for the first time and he would begin to learn more about the group of diseases that share the common dysfunction of depositing abnormal proteins in one or more organs of the body.
Building knowledge about amyloidosis
Five years ago, reading what he could find about amyloidosis in the medical literature was very scary, Anderson said. He also discovered that then, as now, his options for expert care were very limited: Only a small handful of amyloidosis treatment centers in the United States, Stanford's among them, provide the experienced multidisciplinary care amyloidosis requires.
Yet now, five years later, Anderson is well enough to have returned to his medical practice. He still lives with amyloidosis—there is no available cure—but the dysfunctional cells that once threatened his life are under control.
"For Dr. Anderson to be looking and feeling as well as he is, it's tremendous," said Ron Witteles, MD, co-director of the Stanford Amyloid Center and one of Anderson's doctors since his diagnosis in 2008. "And, fortunately, he is not alone."
Witteles was the Stanford cardiologist who called Anderson shortly after Anderson learned that a heart transplant would be the first step in his care—and that Stanford would be willing to perform the surgery on a patient with amyloidosis.
Typically, people with an incurable, underlying disease that could attack a transplanted organ aren't considered candidates for a transplant. Even when it was first established five years ago, as the first treatment center in the Western U.S. for amyloidosis patients, Stanford was at the leading edge of care for amyloidosis. Witteles and the Amyloid Center's other co-director, hematologist Stanley Schrier, MD, assembled a team of specialists to care for patients with the systemic effects of the various forms of amyloidosis.