June 28, 2019

How a doctor diagnosed his own life-threatening illness—after a hospital sent him home

Daily Briefing

    Editor's note: This popular story from the Daily Briefing's archives was republished on Jan. 4, 2021.

    When Jay Kostman, an infectious-disease specialist, woke up with his arm tingling and a heaviness in his leg, he thought he was having a stroke. But after listening to his heart, he heard a "shock[ing]" sound that gave way to his true diagnosis, Mari Schaefer reports for the Philadelphia Inquirer.

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    The symptoms

    At first, Kostman, medical director for Philadelphia FIGHT Community Health Centers, "wasn't concerned" when his left arm started tingling one February morning, Schaefer writes.

    The tingling, Schaefer writes, was short-lived and had passed by the time he departed for work. But during his commute, Kostman said his left leg began to feel "heavy," and "[b]y the time he reached his stop, [he] had a hard time lifting his leg up the stairs, and his gait was off," Schaefer writes.

    Kostman thought he was having a stroke.

    He quickly took an aspirin and then caught an Uber to Pennsylvania Hospital, where a neurologist deemed him a "stroke alert."

    However, Kostman had none of the usual stroke risk factors; he didn't smoke, or have heart disease, high blood pressure, or diabetes. The situation, Kostman said, was "weird."

    A CT scan showed no evidence that Kostman was experiencing or at risk for a stroke.  But it did show evidence of a "false aneurysm," which occurs when a blood vessel is injured, causing blood to collect in the surrounding tissue, Schaefer reports.

    After seven hours, doctors were still unsure what happened to Kostman, but suggested he schedule a neurology follow-up and another MRI.

    "I was just short of shell-shocked, to put it bluntly," he said. "I was relieved initially that there was no stroke."

    The real diagnosis

    The next morning, Kostman realized that none of the doctors he saw at the hospital had listened to his heart. So he found an old stethoscope and listened himself.

    "I was shocked by what I heard, it was so loud," he said.

    Kostman had a heart murmur, which he said wasn't there when he received a physical exam six months prior.

    "All the pieces suddenly fell together," Schaefer writes, "the new murmur, the leg pain, the false aneurysm." Kostman realized he had mitral valve endocarditis, a bacterial infection of his heart valve.

    After his discovery, Kostman told his wife, Donna Huryn, to drive him to the hospital, where the diagnosis was confirmed. Four days later, Kostman was transferred to Penn Presbyterian Medical Center, where he previously worked for 17 years, to undergo heart surgery to repair the valve.

    Doctors found that his leg pain was caused by a clot in an artery that was related to his endocarditis. Doctors also found that the "false aneurysm" was actually a mycotic aneurysm, which was caused by the bacterial infection.

    Kostman was hospitalized for 30 days and experienced complications during his stay. However, now, he thinks his "prognosis is good," he said. 

    The key in his medical history

    Kostman said his condition was congenital, adding that his mother and brother had mitral valve prolapse.

    But while Kostman said the outcome would have been the same even if a doctor had checked his heart at the first ED visit, he conceded that if they'd asked about his family medical history, he would've mentioned the history of heart conditions, which may have led to an earlier diagnosis.

    According to Kostman, his experience further proves that doctors often rely more on diagnostic tests than talking to patients, Schaefer writes.

    "His advice for patients: Always ask for a thorough exam, and whether there could be an alternative diagnosis," Schaefer writes (Schaefer, Philadelphia Inquirer, 6/21).

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