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December 10, 2012 1 Comment

On Soup, Sex, and Cystic Fibrosis

My last blog post, in which I discussed how sometimes physicians see only one side of their patients’ lives, provides a good lead into this week’s Featured Story of the Week.

“Soup or Sex” is a sort of doctor-patient love story, and part of why the doctor falls for her patient Maurice has to do with her other patients, particularly a young woman she admits to the hospital with cystic fibrosis (CF). This young woman is based on my recollections of some CF patients I cared for during my residency. It doesn’t represent a particular patient or even most of the CF patients I cared for. It does represent among the most memorable – and for all the wrong reasons.

Why? Because I felt useless and unappreciated, and because the CFers (as we called them, reducing them to their disease) were right and we all knew it. With rare exceptions, their care followed a protocol and was delivered by nurses and respiratory therapists. Yet the medical system asked everyone – the sick young adults with cystic fibrosis and we overworked residents – to do things that often weren’t necessary and in doing so, put us both in uncomfortable positions.

But medicine is amazing. Twenty years later, people with CF are living full lives.

I know this because UCSF – the University of California, San Francisco – where I work, revamped their website a couple of years ago and started producing powerful and engaging digital feature stories and videos about some of our greatest successes. Check out this recent video “A Breath of Hope” about kids and young adults living full and very normal lives with CF:

http://www.youtube.com/watch?v=s6Ak94toi8k

And here’s an excerpt from the FEATURED STORY OF THE WEEK “Soup or Sex”:

Maurice Kasmarek was my second admission on the first day of my first real job as a doctor. I’d been hired as a hospitalist by the same large San Francisco Health Maintenance Organization where I’d finished my training just two weeks earlier, and I marveled that the world suddenly and somewhat arbitrarily considered me fit for unsupervised practice. My inaugural patient that day, a twenty-two year old with cystic fibrosis, came in every three months carrying pre-printed orders from her pulmonologist detailing every aspect of her care. I was fairly sure I’d admitted her at least once before during residency but though she knew all the nurses by their names and significant others and children and even pets, she didn’t remember me at all. When I walked into her room she said, “Do you really even need to examine me?” I said I really did, and she said, “All right then, let’s get this over with. But you’re gonna have to read my chart to get the history.”

Maurice showed up an hour later and after being wheeled across the street from Oncology, refused to let the transport guys push him down the hallway to his room. “If I’ve got to go into this place,” he argued, “at least let me get there under my own steam.” It took him twenty minutes to cover twenty yards.

I tracked his progress from the nursing station. “Lookout, honey,” said the nurse beside me who, despite his omnipresent five o’clock shadow, was rumored to be one of the locally famous transvestites, The Sisters of Perpetual Indulgence. “This one’s a heartbreaker.”

Once Maurice caught his breath and settled in, I went into his room to do the History and Physical.

“Mr. Kasmarek?” I began.

“Oh, hell,” he interrupted. “The name’s Maurice. We’re both grownups, why don’t you call me that?”

“Okay,” I said, though usually I’m a bit of a traditionalist when it comes to patient-doctor etiquette.

He raised the part of his forehead that should have had eyebrows. “So what’s your name?

“Chitra,” I replied. “But you can call me Dr. Agarwal.”

I waited a split second and then I smiled.

“Ha!” he said. “You had me going. Yes you did. Bravo, Doctor Chitra, bravo!”

And so, in the first two minutes of our acquaintance, we became Maurice and Doctor Chitra, a compromise arrived at without any negotiation and a solution that pleased us both….

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One Response to On Soup, Sex, and Cystic Fibrosis

  1. TravelsDate March 19, 2013 at 2:42 am #

    Have you ever check travelsdate.com? I have been a member of this site for a couple of months, and it’s a good one.

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Resources:

New York Times Health: http://newoldage.blogs.nytimes.com/ and http://well.blogs.nytimes.com/

Health in Aging: http://www.healthinaging.org/

Family Caregiver Alliance: http://www.caregiver.org/

Talking to Your Doctor: http://www.nih.gov/clearcommunication/talktoyourdoctor.htm

Kaiser Health News: http://www.kaiserhealthnews.org/

NYU Literature, Arts and Medicine Database: http://litmed.med.nyu.edu/Main?action=new

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