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January 7, 2019

It's just the flu, doctors told him. (But the real culprit was far stranger.)

Daily Briefing

    Editor's note: This popular story from the Daily Briefing's archives was republished on Oct. 3, 2019.

    When the patient and his wife came to Lisa Sanders, they weren't seeking a diagnosis. Instead, the couple wanted to know why, despite scores of doctor visits and treatments, the patient was still suffering—and the final answer was not what they expected, Sanders, a physician and teacher at Yale School of Medicine writes in the New York Times Magazine.

    First, the flu

    About a year and half before coming to Sanders, the patient caught what seemed to be the flu, Sanders writes. Before that, he "had been perfectly healthy," Sanders writes.

    The patient managed to shake the fever and congestion, "but terrible body aches remained," Sanders notes. "He coughed constantly and felt so tired that just walking to the mailbox would leave him panting for air and shaking with fatigue," Sanders explains. Nonetheless, the patient was someone, Sanders writes, who, according to his wife "needed to be busy."

    So, he returned to his routine.

    But while driving to work a few weeks later, the man unknowingly drifted into the shoulder of the road. "All he remembered was that one minute he was on the road, and the next he wasn't," Sanders writes. "For the first time since he initially got sick, he was worried."

    Seeking a diagnosis

    Concerned for his health, the patient went to an urgent care center, where a chest X-ray and further testing showed he had fluid surrounding his lungs and an abnormal EKG. The nurse, "concerned" that the patient might have pneumonia, referred the man to a cardiologist and prescribed antibiotics.

    A second X-ray at the cardiologist's office showed that there was more than a liter of fluid surrounding the patient's lungs that was restricting the man's breathing. Doctors drained the "clear, yellow fluid" from the sack, which provided initial relief— "but it didn't last," Sanders writes. "[W]ithin days the shortness of breath returned."

    Over the next few weeks, more fluid accumulated in the man's lungs and his abdomen, but the fluid's source stumped doctors. An echocardiogram taken at the hospital showed that so much fluid had accumulated in the man's pericardium—the sack surrounding his heart— that "[t]he heart could barely pump," Sanders writes.

    The doctors drained the fluid from the man's pericardium and "[a] retinue of subspecialists searched for an explanation for this flood of fluids," but they didn't find one. "His heart was strong. ... His lungs were fine. His liver was fine. There was no infection, and no cancer," Sanders writes.

    A diagnosis, but no relief

    From there, the patient went to a rheumatologist, who seemed to have "found an answer," Sanders writes.

    The patient tested positive for Sjorgen's syndrome, an autoimmune disorder that causes white blood cells to attack organs that make fluids like tears and saliva, and was later diagnosed with another autoimmune disorder called undifferentiated connective tissue disorder.  

    With the two new diagnoses, the patient was taking four different immune-suppressing medications, but even after months of treatment he still "need[ed]  to have his lungs and abdomen drained of 10 to 20 liters of fluids every couple of weeks."

    Enter, a new doctor

    After all this, the patient came to Sanders.

    "After hearing about their terrible journey, I examined the patient carefully," Sanders writes. "His arms were thin and wiry, just bone and sinewy muscle. ... In contrast, his abdomen was huge—the belly of two Santas. The skin there was drum-tight. His neck, like his arms, was thin, and the veins on each side were hugely distended with blood," Sanders recalls.

    After some thinking, Sanders concluded that the heart was the only organ that could cause such an extreme accumulation of fluids. "I didn't believe it was his autoimmune disease causing all this," Sanders writes. After all, "he was being treated" for that.

    But the patient's cardiologist had insisted that his heart was in good shape.

    Sanders reached out to Andre Sofair, an internist at Yale University, to hear his perspective on what was causing the patient's symptoms. "His answer was familiar—surely this was the heart," Sanders writes.

    After additional inconclusive tests, Sanders landed on a new diagnosis: a rare disorder called constrictive pericarditis. "In this disorder, the pericardium is injured—usually by a viral infection—and as it heals, it shrinks," Sanders said. "Stuck in this shrunken jacket, the heart can only pump a fraction of the blood needed by the body." Sanders realized that the virus that doctors initially diagnosed as the flu could have damaged the patient's pericardium. 

    Sure enough, when the patient went for another echocardiogram "[i]t showed a heart pumping hard, but constrained inside a shrunken, thickened pericardium."

    Sanders referred the man to a heart surgeon at Yale, who removed the damaged sac. "Once [the surgeon] made the initial incision down the length of the scarred pericardium, the blood flow through the heart more than doubled."

    After the operation, the man had a "remarkabl[e]" recovery, and was back to work within three weeks of the surgery. He was even well enough to spend time with his wife for the holidays (Sanders, New York Times Magazine, 1/2).

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