In this series, The Arc of Massachusetts will be spotlighting Operation House Call Students of the Month. Each month, we will be profiling one student who has taken part in OHC and shared the impact that the program has had on them.
“The pulmonology physicians at Boston Children’s Hospital are the leading world experts on interstitial lung disease (ILD). They’re experts at reading the CT scans, interpreting the pulmonary function testing, titrating oxygen requirements, identifying genetic targets for immunotherapy to direct immunotherapy, and even replacing the fibrosed and dysfunctional lung tissue of late-stage ILD with transplants and promoting longevity of the transplant tissue by preventing acute and chronic rejection.
Today, however, I met with a different set of experts: a patient and family – leading world experts on living with ILD. The theme of our discussion with the patient and family was mutual and bidirectional teaching. Sure, doctors were able to tell Mom just how far the ILD was progressing and what the functional prognosis of her daughter’s lung fibrosis might be, but that was only a tiny piece of living with ILD: the vast majority of living with ILD has nothing to do with CT scans and PFTs.
As a doctor, listen to your patients and try to see the world from their perspective. Learn from them. They might do things against your medical advice, but try to understand why. Maybe they delayed coming to the hospital because it was the child’s first school play and all she wanted to do was be able to say her lines in front of an audience, like any other 9-year-old. Everyone in the child’s life wants what’s best for her, but they’re all coming from different points of view.
In the end, what’s best for the patient is collaboration between all the experts: experts in ILD, experts in living at home with supplemental oxygen, and anyone else who’s an expert on the child – her family.”
