John Hansen-Flaschen: “ARDS survivors have a different set of issues.”
I became interested, if that’s the word, in ARDS this past summer, when my tap-dancing, grandchild-adoring mother-in-law went into a New Haven hospital for minor surgery on her small intestine. At 79, she knew well that there is no such thing as minor surgery, and this one turned out to be more involved than her surgeon had anticipated. But afterwards she was alert and joking with her family, and the doctors expected her to be released in a day or two. That was June 1. By June 3, she was starting to act “a little loopy,” in the words of my wife, Pat. With her blood-oxygen levels slipping, she was put on an oxygen mask, then, after quickly being moved to the ICU, a BiPAP mask. The next day she was sedated into a paralyzed state and put on a mechanical ventilator. According to my wife’s detailed notes, ARDS was not mentioned until June 13, 10 days after she arrived in the ICU. The next day, the pulmonologist who had finally been summoned told the family that “unless she comes up with some new problems, I’d expect her to make a full recovery.”
She died five days later.
It was only then that I realized that ARDS was the same syndrome that had killed a wonderful, healthy 11-year-old boy in my neighborhood, an event for which words like tragedy are pathetically inadequate. This had gotten personal.
The day after her mother’s death, my distraught wife was searching on the Internet for answers when she came across a notice on the ARDS Support Center’s website (ards.org), noting that Penn and HUP had been designated by the NIH as one of six Specialized Centers of Research in ARDS. After describing the nature of Penn’s research, the notice thanked the ARDS Support Center for letting the Penn team share its findings with “the larger community of people who know first-hand the devastation of this terrible disease.” The author was John Hansen-Flaschen.
Pat, still in Connecticut, sent me an email: “Do you know this guy by any chance?”
As it turned out, I did. He had done a photo essay for the Gazette some years ago [“Learning to See Lancaster Avenue,” Jan|Feb 2003], and I remembered him as a good guy whose interest in medicine went well beyond the clinical and deeply into the humanistic aspects. I sent him an email, asking if he’d be willing to talk with Pat about her recent unhappy experience with ARDS. A few days later I heard back from him: Yes, he would. The next evening, after offering his sympathies, he got right down to business.
“Tell me exactly what happened,” he began. And so she did.
He listened intently, “totally focused on what I was saying,” Pat recalls. “I didn’t think he’d want to hear every last detail, but it became apparent that he did, stopping me to ask a number of questions along the way about the specifics of when different events occurred.” After she finished, he asked her if anything was still bothering her about the experience.
“I told him how I had been obsessing about certain things,” she says. “He said that the [loved ones] of ARDS victims sometimes have PTSD-like symptoms—which I totally believe. You go over the same things again and again in your head.”
It was something of a relief when he told her that “once my mom was at 100 percent oxygenation and paralysis, the best possible outcome was a very prolonged illness, with a high expectation that she would never be herself again. I knew she would not have wanted to live that way. Up till that moment I had thought that if my mom had been able to turn the corner and survive, she would have been fine.
“Talking to John Hansen-Flaschen made me realize that my mom’s experience was far from unique,” Pat concluded. “He told me that line-by-line of my narrative, my mom’s was a ‘textbook case of ARDS.’” Including the fact that ultimately, we may never know exactly what happened to bring it on.
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