When Words Fail: Hard Lessons That Come From Silence

Recently, I found myself unintentionally listening in on a phone conversation between two family members. They were talking about a sudden death, an emotional subject. But the tone of their conversation was rigid, with information relayed in brisk staccato. They were talking, but I wondered, were they connecting? Did this…

The Pros and Cons of Sharing Medical News Online

Growing up, my older sister and I were tasked with calling relatives when our younger sister was hospitalized due to a cystic fibrosis exacerbation. We relayed the news while my mother hurried around, packing bags and getting ready for the inpatient stay. I assume it was helpful — one less…

‘Satisfied’ (With My Care)

If you’ve ever been hospitalized, you likely received a survey upon discharge that asked, “Were you satisfied with your care?” Patient satisfaction is important because it helps hospital staff produce patient data, create new initiatives, and enhance transparency. I’ve been to many hospitals over the course of my career…

How to Talk to the Hard of Hearing

Cystic fibrosis took my sister’s hearing. Well, actually, it was prolonged exposure to Tobi (tobramycin). Tobramycin is a frequently prescribed bactericidal antibiotic, or aminoglycoside, that’s effective in dealing with CF exacerbations. Because it’s so good at beating back pseudomonas, many adult CFers use it frequently and for extended…

Trust Me, You Should Talk About It

“This just feels so sudden,” I said to the doctor who had just become my sister Mary’s new CF physician. Days before, she’d been transferred from one CF center to another in need of an emergency lung transplant. Though I had always known that my sister would eventually need a…

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