I thought this was an odd response: A father’s intuition on misdiagnosis

John James' story:
Early in my son's failed diagnosis I told his lead cardiologist that I could get a previous electrocardiogram [which produces graphs of the heart's electrical activity over time] done a few months before my son's non-fatal collapse. That cardiologist wasn't interested in this previous EKG. Since I carried a small card in my wallet with my EKG, I thought this was an odd response from the cardiologist if he knew what he was doing. My intuition said I need to find another hospital for my son. Unfortunately, I did not follow my intuition and my son lost his life to incompetent medical care. The changes in my son's EKG would have pointed the way to the proper diagnosis, which was acquired long QT syndrome [a rare heart condition].

John James' Advice: If I could tell patients only one thing it would be to follow your intuition. If you think there is something wrong where you or a loved one is being diagnosed or treated then take charge, get a second opinion, or just get out.

Read a happier story about the role of a patient’s intuition in choosing medical treatment. Thanks to John James for this story.

Click here to get John’s book and e-newsletter subscription.

From the other side of the stethoscope: Dr. Wendy Harpham

Wendy Harpham is a doctor of internal medicine, best-selling author, long-term cancer survivor and mother of three. Throughout her career, she has pursued her mission: "Helping others through the synergy of science and caring."

Born, raised and educated in New York, she moved to Texas in 1979 to complete her post-graduate training in internal medicine. In 1983, she opened a solo practice at Presbyterian Hospital of Dallas, where she combined the best of modern technology with old-fashioned caring. Based on her belief that well-informed patients do better and feel better, she developed teaching tools to educate her patients about their illnesses and treatments.

Dr. Harpham told her patients she'd care for them until she retired on her 80th birthday. But her dream was shattered in 1990 by her diagnosis of non-Hodgkins lymphoma. She was only 36 years old. Dr. Harpham has been in and out of treatment ever since.

With the same determination that marked her work as a physician, she has overcome the many challenges of life as a cancer patient. She has learned how to find hope when treatments aren't going well. How to make difficult treatment decisions. How to calm fear of recurrence. How to deal with chronic post-cancer fatigue. And how to balance hope and acceptance.

When ongoing illness forced Dr. Harpham to stop practicing medicine and redefine her career, she turned to writing as a way to continue to educate, comfort and inspire patients. From her useful perspective as physician-patient, she began sharing her hard-won insights and tips for getting good care and living as fully as possible.
With the publication of her first book in 1992, she coined the term "Healthy Survivor" and presented her three step approach to "Healthy Survivorship": (1) Obtain sound knowledge, (2) Find and nourish hope, and (3) Act effectively.

Her later books also made significant contributions to survivorship by discussing the notions of a "new normal" and "post-cancer fatigue," as well as offering the practical "Harpham Decision Tool" to help patients make wise treatment decisions. All Dr. Harpham's books blend scientific evidence-based information with practical philosophy.
In addition to her books and articles for patients, Dr. Harpham writes for a professional publication, Oncology Times. Her popular column—View From the Other Side of the Stethoscope—addresses common yet rarely discussed patient dilemmas and professional challenges in the care of cancer patients.

Dr. Harpham's lymphoma is in remission, but limited stamina prevents her from returning to clinical medicine at this time. So she continues to devote her energy to helping survivors through her speaking, writing (books, articles and blog) and activities as a patient advocate (member of steering committees, oversight boards and think tanks; interviewee on national shows such as The Today Show and The Oprah Winfrey Show; captain of Wendy's Eagles).

Advice: Look for a doctor who has seen the view from the other side of the stethoscope. And read Dr. Harpham’s new book, “Only 10 Seconds to Care: Help and Hope for Busy Clinicians.”

Read a story about another physician patient. Thanks to Dr. Harpham, whose biography is reprinted from her blog, WendyHarpham.com.

The Patient Safety Blog Bookshelf

Over the last year or so, I've mentioned many books in Patient Safety Blog posts. These might be useful for a course syllabus or reading list:

Addiction, by Dr. Vatsal Thakker

Better: A Surgeon's Notes on Performance, by Dr. Atul Gawande

Broken: My story of addiction and redemption, by William Cope Moyers

Dartmouth Atlas of Healthcare, by Dr. John Wennberg et al

Diabetes Burnout, by Dr. William Polonsky

Fight Your Insurance Company and Win: Secrets of the Insurance Warrior, by Laurie Todd

First Patient, by Dr. Michael Palmer

First Year Parkinson's Disease, by Jackie Hunt Christensen

Havens: Stories of True Community Healing, by Leonard Jason and Martin Perdoux

How Doctors Think, by Dr. Jerome Groopman

Intern: A Doctor's Initiation, by Dr. Sandeep Jauhar

Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia, by Dr. Thomas Graboys and Peter Zheutlin

My Mother, Your Mother, by Dr. Dennis McCullough

My Stroke of Insight, by Jill Bolte Taylor

Navigating the Healthcare Maze: What You Need to Know, by Jeffrey Knott

Nordie's at Noon: The Personal Stories of Four Women "Too Young" for Breast Cancer by Patti Balwanz, Kim Carlos, Jennifer Johnson, and Jana Peters

On Hallowing One's Diminishments, by John Yungblut

Patients beyond Borders, by Josef Woodman

Rapt, by Winifred Gallagher

A Sea of Broken Hearts, by Dr. John James

Snake Oil Science, by R. Barker Bausell

Swimming in a Sea of Death, by David Rieff

To Love What Is, by Alix Kates Shulman

When Illness Goes Public, by Dr. Barron Lerner

When You're Falling, Dive, by Mark Matousek