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Night Call

Heidi Johnson-Wright September 11, 2015 10 Comments

Heidi Johnson-Wright

When I was nine years old, I was diagnosed with juvenile rheumatoid arthritis, an autoimmune disorder that triggers an inflammatory response of the joints, causing swelling, stiffness and severe pain. The disease sped through my body like wildfire.

By the time I was fifteen, my hip joints were utterly ruined. Just getting out of bed was a slow, carefully choreographed sequence of movements, with frequent pauses to allow the pain to subside. When I walked, my hips emitted sickening crunching sounds, bone grinding on bone.

I kept denying how bad my hips were, because I knew that the only solution was joint-replacement surgery. The thought of having my joints sawed through and torn away, and then having metal replacements hammered

Assaulted by “Health Care”

Sandra Shea January 23, 2015 23 Comments

Sandra Shea

I’m no stranger to dealing with the medical world and its billing systems. I’m a triple cancer survivor, had knee surgery in 2012 and now have ulcerative colitis. All told, I’ve had eleven surgeries and fourteen colonoscopies. Paperwork is practically my middle name.

But the last twenty-four hours have been ridiculous.

In that time, I’ve had three different encounters with healthcare billing–each absurd in its own way, and each more challenging than the last. Things got to where I almost had to laugh. And if almost $10,000 of my money hadn’t been at stake, I would have.

Yesterday morning and early afternoon were punctuated by the following events:

Chemo or Lourdes? Welcome to Cancerland

Michael Carbine December 5, 2014 14 Comments

Michael Carbine

Dr. Peterson, the radiation oncologist, gets right to the point.

“The medical center’s tumor board has concluded that your cancer is inoperable, incurable and untreatable,” he says flatly. “Any chemotherapy or radiation treatments would be palliative in nature.”

He begins explaining the reasons behind the board’s verdict, but everything he’s saying washes out. My mind stopped working as soon as I heard the words “incurable” and “palliative.” I am sliding into shock.

Dr. Peterson pauses.

Collateral Damage

Brenda Scearcy May 16, 2014 13 Comments

Brenda Scearcy

Dr. Robert’s office felt right to me, with a musical birdsong soundtrack, soft lighting and fresh green tea, and I had my best friend in tow: piece of cake. In this serene atmosphere, I was sure that I’d find out what to do next to finish treating my endometrial cancer.

It’s probably gone now, since my hysterectomy two weeks back, I thought. But let’s play it safe; he’s the gynecological-cancer guru.

Like a general gearing up for combat, Dr. Robert said, “We can beat this. We’ll do a second surgery to remove lymph nodes and omentum–robotically, of course, so your recovery time will be quick. Down the road we’ll definitely do radiation and chemo, and your odds of recurrence will go way down.”

The Pros and Cons of Living with a Terminal Illness

Ellen Diamond May 9, 2014 8 Comments

Ellen Diamond

Before I retired in 2000, I worked in a state agency as a peer counselor, or more formally, an employee assistance program (EAP) coordinator. The “coordinator” part was there because my job description wasn’t actually to do counseling; it was to assess the problem and refer the client for help.

But of course both of those processes involved counseling. We just couldn’t call it that.

In 1986, shortly after I’d begun the job, I was separately visited by two employees with HIV/AIDS. Treatments such as the antiviral drugs used so successfully today were nearly a decade away, and a diagnosis of HIV meant almost certain death. These clients were understandably upset and frightened, but they each made it clear to me that they

Unsuspected Symphony

Jeremiah Horrigan April 8, 2013 No Comments

Jeremiah Horrigan

No one goes to a hospital to heal. They go because they must–as I did three years ago, when a one-hour colonoscopy turned into a four-day surgical sleepover.

My grandfather had warned me long ago against hospitals. “You don’t want to go there,” he said. “That’s where the sick people are.” Pop died at the age of ninety-four, at home.

His warning came strongly to mind as I walked into the place that I’ve come to call HospitalWorld. Silently, I replied: Hospitals are where the sick people are, all right. They’re also where the doctor people are. I have no choice.

I was fifty-nine years old, and, after years of foot-dragging, this would be my first colonoscopy.

Desperately Seeking Herb Weinman

Steven Lewis March 15, 2013 1 Comment

Steven Lewis

Minor chest pains that woke me early one morning–and which did not go away three, four, five, six hours later–landed me flat on my back at a local emergency room, a perversely comforting beep beep beep issuing from the monitor hanging precariously over my head.

Frankly, I didn’t really think that I was having a heart attack–as a former EMT, a devoted watcher of medical television, and a cultural cousin of Woody Allen, I’m ridiculously well versed in the symptoms of a myocardial infarction. However, after I’d endured a morning of chest pains at an age where all warranties have lapsed, it was prudent to go to the hospital. And since my wife was out of town–and my grown kids off with

Five Years to a Cure

Ellen Diamond August 24, 2012 No Comments

Ellen Diamond

Recently, while reading a post in an online chat group for people with chronic lymphocytic leukemia (CLL), I spotted an intriguing comment. At an important conference, a world-renowned hematologist had referred to a “five-year timeline” for a cure.

This took me back fourteen years, to when I’d just been diagnosed with CLL. There was a Gilda’s Club near my workplace; I’d always passed it quickly on my way home. Now I found myself stepping through the doorway to hear a top specialist talk about my disease.

I recall his closing words: “Give me five years, and I’ll give you a cure.”

As desperately as I wanted to

Cadaver Happy Face

Rachel Willis July 13, 2012 No Comments

Rachel Willis

Sitting with my mother in a white-walled exam room, awaiting the surgeon’s arrival, I felt happy.

Earlier this spring, I’d landed hard on one leg during a volleyball game and collapsed, hearing my knee make a terrible cracking sound, like all ten knuckles firing off. When I resumed playing, after several weeks of rehab, it happened again.

Now we were awaiting the MRI results.

You’d think I’d be nervous. I was seventeen, college-bound on a full-ride volleyball scholarship. Would this injury jeopardize that? But I felt glad–and touched with a kind of glamour. During hundreds of boring or grueling practices, I’d longed to sprain an ankle or

Small Talk

Greg Fuson October 7, 2011 No Comments

Greg Fuson

Turns out I’m anemic.

As in, I have anemia. When I mention this, true friends will retort, “Yeah, you’ve been anemic for as long as we’ve known you.” Ha ha. (Assholes.) That’s because a true friend is comfortable enough to make fun of you; it’s the always-polite ones you have to wonder about. But that’s not where I’m going with this.

Apparently anemia is rare in males, and when it occurs, doctors want to figure out why. You get a phone call from your physician (“I want to run some tests”), hang up, try to finish what you were working on, and discover that you can’t. That it was

A Skeptic Stands Corrected

Kyna Rubin March 18, 2011 No Comments

Kyna Rubin

I’m prostrate in a Fujian hospital bed. It’s 1980 China, where I’m on a job interpreting for National Geographic–my first gig after graduate school. Fourteen-hour workdays have worn me down, and I’ve contracted bronchitis.

The clinic doctors are required to treat me with both Western and Chinese medicine, which explains the daily shots of tetracycline in my now bruised thigh and the grainy little brown pills I gamely down with boiled water.

“What’s in them?” I ask.

I think I hear something about deer’s antlers and bear sperm, and I don’t want to know much more. But I recover.

Was it the modern or the traditional treatment that

Falling in Love With My Doctor

Judith Lieberman September 10, 2010 No Comments

Judith Lieberman

The other doctors I consulted called him brilliant. His past patients praised his compassion. He actually responded to e-mails. And, lastly, he was known as the best-looking doctor at the cancer center. What more could I ask?

On the other hand, what choice did I have? After twelve years, I was facing a recurrence of a relatively rare oral cancer, located inconveniently at the base of my tongue. The treatment options were not great. The radical surgery recommended by one prominent cancer center could have left me unable to swallow, talk or eat normally.

My incredible husband stayed up many nights researching surgery, radiation, chemotherapy and all the combinations. On the bright side, my teenagers cleaned their rooms without being asked!

The last

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

Tag: patient stories

Night Call

Assaulted by “Health Care”

Chemo or Lourdes? Welcome to Cancerland

Collateral Damage

The Pros and Cons of Living with a Terminal Illness

Unsuspected Symphony

Desperately Seeking Herb Weinman

Five Years to a Cure

Cadaver Happy Face

Small Talk

A Skeptic Stands Corrected

Falling in Love With My Doctor

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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

Tag: patient stories

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