fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

Stories

Thanksgiving Reflections

Pulse Writers and Editors

Editor’s Note: This Thanksgiving tugs hard at the emotions. While an economic gale roils the world, our freshly chosen captain stands on deck, pointing out a new direction for our battered ship of state. At the same time, each of us has personal joys and sorrows to contemplate. We asked Pulse’s writers and editors to take a moment to share their reflections.

This year, I am thankful for my four quirky little grandsons, my three loving children and my beloved husband of almost forty years. I am especially thankful that the country we share has a chance to find its way again and to call all of us, young and old, toward a future that can still be bright and full of promise. –Johanna Shapiro

I’m thankful for my daughter, and for how she kicks and growls in delight when I enter her room at 6 a.m. –Joanne Wilkinson

As one who came of political age in the 1960s, I remember as only a young man can the losses of JFK, RFK and MLK. As an older man, I’m all too aware of the fragility of any single human life. But I will be grateful this Thanksgiving for » Continue Reading.

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Hospice

Joanne Wilkinson

My patient’s beagle is very quiet. He lies next to the brown leather living-room chair she used to sit in when I would come to see her at home. His nose is down on his paws, and his round eyes look up at me, up at the nurses, the home health aides, the family members who go back and forth between here and the back bedroom. He is very alert, but silent. He stays perfectly still.

My patient’s sons want to know things. How much longer will it be, will she be in pain, what will the end be like, will she be conscious? Should they take the rest of the week off from work, should they call the son in California and ask him to come? Yes, I tell them. Bring the relatives from far away, call in sick to work, get the minister, the undertaker, the cousin with the good voice who wants to sing at the service. It won’t be long. 

They pace back and forth in the kitchen, stirring the air with their movement. Their footsteps shake the house’s foundations. Would it have been different, they ask, if we’d caught it earlier, if she’d

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My Patient, My Friend

Death is not always the same. Quantity, fixed: one per patient. Quality, variable.

Doctors see many deaths, of different kinds. This is true of any doctor, whether or not he or she is a surgeon, as I am.

It’s easier for the doctor when death is expected, following a long illness, a chronic disease. Harder when it’s unforeseen–the heart attack, the accident, the gun shot, the sudden death in a young man or woman who seemed a conqueror.

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Halloween Horrors

Paul Gross

One October evening last year, I went to our local pharmacy to pick up a prescription for my daughter. I made sure to bring Cara’s insurance card because my employer had switched us to a new health plan.

I wasn’t sorry about the change. Our prior plan had been operated by incompetents–although they might only have been crooks, I couldn’t be sure–who also managed our flexible spending accounts. These accounts, you may recall, collect pre-tax income from your pay and then return it to you to pay for out-of-pocket medical expenses.

With that plan, nothing ever worked as advertised. I would submit a dental bill for reimbursement and the company would review it for three months before sending me a denial notice, stating that my health plan had no dental coverage.

“I know that I have no dental coverage,” I’d tell the representative on the phone. “That’s why I put a big X in the box labeled Flexible Spending Account.”

“You sure did!” she’d say cheerfully. “I don’t know why they did that. You’ll have to submit it again. This time, put my name on it….”

Or I’d submit a claim for a medical expense that was covered,

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Entry from an Intern’s Journal

Jennifer Reckrey

Editor’s note: Over the next months we’ll be carrying occasional pieces by Jennifer Reckrey, a family medicine resident in New York City. Each week while she was an intern, Dr. Reckrey recorded some of her experiences as a brand-new resident. Today’s story is from week number six. 

How do you convince someone to do something they don’t really care about?

This week I took care of a 58-year-old woman who came to the hospital with one week of fevers, diarrhea, burning with urination, and abdominal pain. Though she probably had an infection, the CT scan she got in the ER didn’t reveal its source. It did, however, show that something was wrong with her uterus and ovaries. If the odd-looking mass was an abscess, it needed to be drained. If it was a cancer, she needed a very different sort of treatment plan. And to find out what was going on, she needed an MRI.

When I first asked her about it, she quickly agreed. She’d had MRIs scheduled in the past (her outpatient gynecologist was concerned about her too), but had always missed her appointments. She seemed glad for the chance to get this cumbersome test over

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Carmen’s Story

Carmen Diaz

I used to be a shy woman who didn’t like the spotlight and never did any public speaking. Ovarian cancer has changed all that. Now I look for opportunities to tell my story. 

I am a 62-year-old, Puerto Rican-born, New York-raised mother of two. I was diagnosed with ovarian cancer in 2004. But for more than a year before that, my symptoms weren’t recognized. 

In January 2003, I started to suffer from abdominal discomfort, back pain, indigestion and heartburn. My primary-care physician told me to change my diet and prescribed medication for my indigestion. After weeks with no improvement, I went to a gastroenterologist, who diagnosed gallstones. In March, I had gallbladder surgery. 

Most people go back to work within ten days, but it took me a month. My fatigue, heartburn and stomach cramps, I was told, were probably a result of the surgery. Over the following months, I kept returning to my primary-care doctor, who prescribed antacids. Eventually, fearing that he’d brand me a hypochondriac, I stopped going.

That fall, during a routine gynecological check-up, I told my ob-gyn that I was feeling pelvic pressure and a burning sensation in my bladder. My pelvic exam and Pap

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In the Nick of Time

Barry Thompson

When the ringing woke me at 3:00 a.m., I hoped that it was my alarm clock. For a neurologist on call, middle-of-the-night phone calls mean trouble; as a rule, you don’t get awakened at that hour unless it’s something really serious.

At 6:00 p.m. the prior evening, a young man had shown up in the ER of one of our satellite hospitals with a severe headache. He’d been diagnosed with a tension headache and discharged with a prescription for acetaminophen with codeine. No imaging studies had been done.

Nine hours later, the patient presented to the ER at our main hospital. He was no longer fully alert, the ER doc told me. I told him to get an immediate CT scan of the head. I was out of bed and through the door in an instant, worrying about this young, otherwise healthy man with a severe headache and reduced alertness. It’s amazing how fast you can drive in the dead of night when you’re nervous that a life may hang in the balance.

I parked in my usual spot, right by the ER entrance, and ran inside. The nurse told me that the patient had been sent upstairs

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Jeannie

Andrea Gordon

“The person with the contractions gets to pick the channel,” I reassure Jeannie, as she tries to talk me into watching The X-Files. It’s not my favorite, but I’m just the moral support–oh, and the doctor.

When she first came to see me, eight months back, Jeannie already had a four-year-old boy and didn’t think that there was much my little white nulliparous self could teach her about pregnancy. I’d offer her my book-learned advice about pregnancy or suggested sources of support, and she would listen patiently, then do what she wanted. She did show up for all her appointments, and she humored me at times: although she refused to stop smoking pot for her nausea, she cut down a little “to make you feel better.”

Jeannie shared everything without embarrassment. Well-trained resident that I was, I asked her about bleeding or discomfort during sex. She said that it sometimes hurt when she was on top, “But he don’t like havin’ to be up there doin’ all the work.”

Now, two weeks before her due date, she’s come into the office contracting. Sure that this is it, she’s already arranged care for her son. We make the ten-minute pilgrimage to

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Losing Tyrek

John Harrington

Tyrek’s mother and I must have spoken for two hours in the Pediatric Intensive Care Unit, covering every topic but the one that was glaring at us: death. A fourteen-month-old child is not supposed to die–and even though I knew the situation was dire, I couldn’t bring myself to face it. So I excused myself, sat down with her son’s chart and stared blankly at it. 

I first met Tyrek and his parents when he was just three months old. Tyrek had Down syndrome, clubbed feet and a large sternal scar on his chest from surgery to repair a complicated heart defect. Despite his bad luck, Tyrek’s most impressive characteristic was his cheery disposition. His mother was a tall African-American woman with straightened hair and warm eyes that always appeared weary. Tyrek’s father stood well over six feet, a sharp contrast to the “little man” he held in his arms.

I became Tyrek’s pediatrician through a referral from a cardiologist who knew that I care for children with special health needs and that I happen to have a son with severe autism. Tyrek’s parents and I bonded quickly, our conversations more animated and collaborative than the typical doctor-patient

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Once

David Goldblatt

Movement disorders can be horrifying. Afflicted persons are solidified or contorted. They may flail so violently that a fork endangers their lives. As a beginning neurologist, I assumed that all such patients curse their fate. Once I got to know Brian, though, I realized that I could be wrong. 

Brian and one of his brothers had inherited Wilson’s disease, a rare, genetic movement disorder that had spared their eight siblings.

People who have Wilson’s disease can’t handle dietary copper properly. It accumulates in–and poisons–the kidneys, liver and brain. Avoiding foods rich in copper does not halt the progression of the disease, but it helps. If patients are also treated early and consistently with a drug such as penicillamine, which binds copper and aids in its excretion, they can expect to live a normal lifespan. If not treated, they die young.

Oscar, Brian’s younger brother, was less affected than Brian in his movements and speech. He looked out for Brian in an unusual way: he punched, pushed and made fun of him. (Psychiatric disorders are common in the disease.) Oscar died in his twenties in a car accident. His spleen, swollen because of Wilson’s-related liver disease, ruptured, and he

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First Patient

It was a quiet knock on my door that morning. So quiet, in fact, that I wondered if I was dreaming. Maybe if I went back to sleep it would go away.

Nope. There it was again: soft but persistent. This time I knew that it really was a knock, and it really was on the front door of my one-room cabin. What I didn’t know was that I’d be hearing that knock for the rest of my life.

I got up, tired and rumpled, and pulled open the door. A young woman I’d never seen before stood there, barefoot and wearing the simple white linen dress of the campesina (as a woman who works the land is called in rural Paraguay). She was probably no more than sixteen, but in her eyes was the look of a mother, and something else: distress. In her arms she held an infant.

Xe memby o-hasy (my baby’s sick),” she said in her native Guarani.

I didn’t understand a word, but I knew it wasn’t good. I looked at her baby–face gray, eyes open, too sick to cry. What was I supposed to do?

Back then, I wasn’t a doctor. Heck, I hadn’t even taken

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Our Town (Chinese Spoken)

By the time Mrs. Zhang came to see me, her headache, left-sided weakness and facial numbness were two weeks old. Like many Chinese immigrants in this country, she’d hesitated to seek medical care because of language and cultural barriers and her apprehensiveness about Western medicine. In fact, she hadn’t seen a physician in the ten years since she and her husband had come to America. Only after a friend told her about me, the sole Chinese primary-care physician in a small Pennsylvania town, did she and her husband come to see me.

Mr. and Mrs. Zhang struck me as a typical older Chinese couple. With smiles on their faces, they bowed repeatedly to everyone in my office.

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