Thursday, November 12, 2009

Who's in Control?

Vonnie was new to my practice. She came in, looked me in the eye and said, "I'm here because I have sarcoidosis. I've looked you up in the Directory of Medical Specialists, talked to friends at the University, and have decided that I want you to be my doctor. Vonnie, I quickly surmised, would be fun but maybe a challenge to care for.

She taught medical terminology to medical assistants so knew all about pulmonary functions, prednisone, rales, wheezes and all the organs which could be affected by her disease. I was just a young pulmonologist at that time and tried to assert some control or at least set some boundaries. We negotiated what tests needed to be done. She was fine with that, but treatment was another issue.

Her disease was serious and progressive. Sarcoidosis was initially named for its red lumpy skin lesions, the name literally meaning "flesh-like" (sarcasm on the other hand literally means "cutting through the flesh"). Small clusters of lymphocytes can multiply and congregate in literally any organ in the body: particularly lungs, liver, eyes, and skin. Researchers have spent a lifetime looking for the cause such as an infectious agent or some kind of environmental exposure. Lots of theories have led up blind alleys. Most patients with sarcoidosis have a benign course often with complete spontaneous resolution, but then there are some like Vonnie, where it is relentlessly progressing.

Vonnie hated the prednisone side effects. The common ones of weight gain, puffiness, bruising, etc. she could put up with, but the mental effects were disabling. She felt spacey, irritable, and just not herself. It was straining family relationships which were all important to her.

Over time, I learned to listen to Vonnie. She reminded me, "Dr. deMaine, you do remember Francis Peabody's dictum don't you."

I nodded.

"The secret of caring for the patient is to care for the patient."

In repartee I said, Vonnie do you remember what the root word of "doctor" means?

"Of course" she smiled "docere 'to teach'. You're my teacher aren't you?"

As things worsened Vonnie's family rallied. Her strong Catholic faith helped her to persevere. She smiled and said, "We Catholics understand suffering!" The end came quickly perhaps from a pulmonary embolism. The family described her wake to me. Vonnie had it all planned: the music, the poems, the silver, china and crystal - and made a wish that all would raise a glass (or two) and wish her well in her new adventure with God.

A few days after her death, a note from Vonnie arrived in my in-box: "Dear Doctor deMaine, Because it is the aim of the physician to heal and to extend life, it must have been difficult for you to let go and allow me to reject the steroids. Yet without the anxiety produced by the prednisone, my spirit is healed. I am 'myself' again. (I did not ask for a personal healing at Lourdes, only that the cause and cure of sarcoidosis be found.) As a result, I am able to embrace life and to live it with a great degree of peace. My children now know me as I am and can learn that death is a companion, not a tyrant. In your own inimitable way, you've give me the kindest of care - a mirror of love with which God tends me. Thanks and prayers, Vonnie."

Comment: One evening about 9 years ago, I was giving a talk to a patient group about sleep apnea. In the middle of the talk, I crossed my arms and felt a very large firm rubbery non-tender lymph node near my elbow. This alarmed me, but I was able to limp through the rest of the talk. Examining myself at home later, I found enlarged lymph nodes all over my body. Immediately I assumed the worst, non-hodgkins lymphoma (cancer of the lymph system). I called the surgeon on call the following day, a Friday, and he took out a lymph node for diagnosis that afternoon. I waited all weekend and then got the smiling message from the surgeon: "You dodged a bullet, it's sarcoidosis".

Mine was different than Vonnie's in that it involved the skin and eyes and not much the lungs. A newer use of the "steroid sparing" drug, methotrexate, worked beautifully for me making me disease free. I wonder if Vonnie is smiling down at me and thinking, "See, doctor and patient, there really isn't much difference. We're a team. D
o you remember my prayers at Lourdes?"


  1. Thank you so much for writing this. I love to see what I have known, that doctors are people. Too often, and I blame the rushed and hurried requirements of medical groups' rules for making money, we patients do not see the heart of medical practice in our physicians. In the beginning of my sarcoidosis, I was on steroids for 2 1/2 years, went through a divorce, and life changed completely for me. I can't take steroids anymore. Best Wishes to you with your illness and your life. Keep writing. Best Wishes from Mama Trep

  2. Thanks. I always had a "love/hate" relationship with steroids. Best wishes in dealing with your sarcoidosis.