David Fajgenbaum: "A drug that could potentially save my life was hiding in plain sight."

This med student was given last rites before finding a treatment that saved his life. His method could help millions

Updated 5:05 PM ET, Mon September 16, 2019

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(CNN)It was just after Christmas in 2013 and David Fajgenbaum was hovering a hair above death.

He lay in a hospital bed at the University of Arkansas, stricken with a rare disease. His blood platelet count was so low that even a slight bump to his body could trigger a lethal brain bleed. A doctor told him to write his living will on a piece of paper.
Fajgenbaum was rushed to a CT scan. Tears streamed down his face and fell on his hospital gown. He thought about the first patient who'd died under his care in medical school, and how her brain had bled in a similar way from a stroke.
He didn't believe he'd live out the scan.
But he did. Turns out his headache wasn't a brain bleed -- just sinus pressure. The chemo had kicked in.
Fajgenbaum was battling Castleman disease, a rare autoimmune disorder involving an overgrowth of cells in the body's lymph nodes. It wasn't the first time a relapse had threatened his life. Massive "shock and awe" chemotherapy regimes had helped him narrowly escape death during four previous attacks, but each new assault on his body weakened him.
    "You learn a lot by almost dying," he says.
    He learned enough to surprise his doctors by coming up with a way to treat his disease. Almost six years later he's in remission, he and his wife have a baby girl and he's devoting his medical career to saving other patients like him.
    Fajgenbaum, 34, recounts his near death and remarkable recovery in a new book, "Chasing My Cure: A Doctor's Race to Turn Hope into Action."
    His story has lessons for the future of rare disease research -- and for living.

    His first love was football

    As a boy in Raleigh, North Carolina, Fajgenbaum spent Saturdays on the sidelines watching the NC State Wolfpack with his dad, the team's doctor.
    At age 7, he was obsessed with becoming a Division 1 athlete. In middle school he would wake up at 5 a.m. to go running. The walls of his bedroom were covered with football play charts.
    David Fajgenbaum training for football at Georgetown University.
    He achieved his dream, making the Georgetown University football team as a quarterback. But during his sophomore year in 2004, his mother died of cancer.
    His obsessive focus deepened, helping him learn to appreciate life's precious moments and understand bad things can still happen to good people.
      "I know people far more worthy of miracles than I am who haven't gotten them," he says.
      Fajgenbaum then earned a master's degree at Oxford University, where he learned how to conduct scientific research so that he could fight the disease that took his mom.
      That relentless focus and scientific rigor would one day save his life.

      In medical school a rare disease nearly killed him

      Fajgenbaum entered medical school at the University of Pennsylvania to become a doctor like his father -- specifically, an oncologist, in tribute to his late mother.
      During his third year, in 2010, he got very sick and was hospitalized for five months. Something was attacking his liver, kidneys and other organs and shutting them down.
      The diagnosis was idiopathic multicentric Castleman disease.
      First described in 1954, Castleman presents partly like an autoimmune condition, and partly like cancer. It's about as rare as ALS -- there are about 7,000 new cases each year in the US.
      The disease causes certain immune signaling molecules, called cytokines, to go into overdrive. It's like they're calling in fighter jets for all-out attacks on home territory.
        Fajgenbaum's doctors knew his body was in a civil war, but they had questions about how and why.
        Fajgenbaum's book, an account of his illness and recovery, came out this week.
        In his hospital bed, Fajgenbaum felt nauseated and weak. His organs were failing and he noticed curious red spots on his skin. But his doctors, focused on saving his life, weren't interested in these "blood moles."
        He asked each new doctor who came in his room what the blood moles meant.
        "They went out their way to say they didn't matter," Fajgbenbuam says. But the med student-turned-patient would go on to prove he was on to something.
        "Patients pick up on things no one else sees," he says.

        He suffered life-threatening relapses

        Castleman disease struck Fajgenbaum four more times over the next three years, with hospitalizations that ranged from weeks to months.
        But even with a top Castleman specialist treating him, there were many unknowns. Fajgenbaum stayed alive only through intense chemotherapy "carpet bombing" campaigns.
        As he repeatedly faced down death, he grieved most for the memories he still hadn't made: graduating from medical school, marrying his college sweetheart and looking into his son or daughter's eyes.