Love in the Time of Primary Sclerosing Cholangitis with Elie Adler, MD
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At The Nocturnist, we are careful to ensure that all stories comply with healthcare privacy laws. Details may have been changed to ensure patient confidentiality. All views expressed are those of the person speaking and not their employer. This episode of The Nocturnist was made possible with the support of the California Medical Association.
This is The Nocturnist, stories from the world of medicine. I'm Emily Silverman. In this episode, internal medicine resident Ellie Adler tells a story about loving someone with a chronic illness, how that relationship changed when she became a doctor, and how her work as a doctor was changed by her relationship. After the story, Ellie and I talk about the basic human need to be needed.
When someone we love deeply needs our help, it often feels really good to give it.
But first, here's Ellie, live in San Francisco.
It's my vacation week. I'm supposed to backpack the Lost Coast with Andrew, my partner. I'm sick, and I'm pissed about it. I'm cycling through the stages of grief, passing quickly by denial because I am painfully congested, and moving on to anger and even jealousy at the relatively glamorous life that Andrew, who is not in medicine, leads. When I say glamorous, I simply mean that he often has two-day weekends, whereas I spend most of my Saturdays repleting potassium and writing discharge summaries. You never get sick. Well, he said, I'm always sick. Which is true, but I often forget it. Andrew carries all the weight when we backpack, so I can frolic through Utah canyons. He shimmies up rock faces and sets an anchor so I can drag myself up with the rope.
He rides his bike with no hands. He even does that somersault thing in the pool when swimming laps. I still have this image of him in my mind sprinting through the rain on a cobblestone street in Mexico, carrying both of our suitcases and managing to hail down a local bus, of course using fluent Spanish. What a dreamboat, right? It's also possible he will lose all of those abilities. Andrew has primary sclerosing cholangitis, a chronic progressive illness in which the bile ducts fibrose and scar down, typically causing liver failure. In his bathroom drawer, next to the beard brush I wish he actually used, is a weekly pill counter he has to use. It's likely Andrew's liver will fail. It used to be hard for me to say that because part of me didn't believe it and part of me was too scared to accept it.
Nowhere in my dream partner description is chronic illness requiring massive organ transplantation. And this was all relatively easy for me to ignore until I started internal medicine residency. On June 22nd, I went from frolicking through Europe with my boo to feeling pummeled by case after case of patients being stripped of their previous lives from their illness. I was suddenly responsible for hospital admissions and discharges, but I often felt powerless to change much about patients' overall prognosis.
What is the premise of Ellie Adler’s story about loving someone with a chronic illness?
I was shell-shocked by this new combination of responsibility and powerlessness, and my mind would often turn towards Andrew's bile ducts. Those goddamn bile ducts, fibrosing for reasons we can't control and don't even fully understand. I oscillated between different coping mechanisms. One day, I would literally attach myself to Andrew, holding his hand even as he was trying to grocery shop. And the next, I would get distant and inappropriately annoyed at him for losing his keys. We would have arguments, and I would wonder if conflict should sound some sort of deal breaker alarm. I wondered if it was worth it for us to work through our differences when so many of his dreamy attributes could fall away.
Then came my rotation on the liver transplant unit. During my first week on the rotation, one of the post-transplant patients coded in the morning before rounds. His heart had stopped. I did the most vigorous rounds of chest compressions of my life before he was declared dead. And then we just went back to rounding on the rest of the patients on the service. I felt this rising sensation from the pit of my stomach up to my throat, and I had to swallow hard and plant my feet on the floor just to stop myself from walking out of rounds.
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