WHEN THE DOC BECOMES THE PATIENT:

Canton physician battles a devastating illness, changing his life and the way he does his job

By SUE SCHEIBLE
The Patriot Ledger

QUINCY - During 16 years as an ear, nose and throat specialist, Dr. Paul Konowitz learned to save the last appointment of the day for patients who had to receive bad news. He always made sure there would be enough time to answer questions.

Then one afternoon three years ago, it was his turn to be the last patient of the day.

He was diagnosed with a rare and potentially fatal autoimmune disorder, pemphigus vulgaris. It is marked by painful, open blisters on the skin and in the mucous membranes of the mouth, eyes and voice box.

There is no cure - only treatments that can have excruciating side effects.

‘‘It is such a cruel disease,’’ he said. ‘‘As a doctor, you almost think you are invincible - that you will get a free pass on the most serious illnesses you treat in others. Of course, you’re not different - you are just as vulnerable.’’

Konowitz, 48, practices in Quincy at Massachusetts Eye and Ear Associates and performs surgery at the Massachusetts Eye and Ear Infirmary in Boston and at Quincy, South Shore, Milton and Carney hospitals.

In June 2004, he was at the top of his career - logging 5,000 patient visits and 500 surgeries a year, well-respected in his specialty of otolaryngology, and on national medical committees.

Two months earlier, however, he had suddenly developed a horrible taste in his mouth, followed by blisters and open sores, and could barely eat. Anti-viral medicine didn’t help. For his daughter Sarah’s bat mitzvah, he had to take in his tuxedo - he had lost 25 pounds. People said he looked great.

That June afternoon, he finished surgery and called the doctor who had done a biopsy on the sores in his mouth. When he heard the diagnosis, he recalled a medical school professor who called pemphigus one of the most devastating diseases anyone could get.

Stunned, he drove home to Canton to tell his wife, Dr. Laurie F. Konowitz, a physician and director of neonatology at Jordan Hospital in Plymouth. She was as scared as he was.

Caught early

The cause of pemphigus is not known, but once it begins, the body produces antibodies that destroy a protein that holds the top layer of the skin and the mucous membranes together with the bottom layers. The surface blistering is just the beginning.

In some ways, he had been lucky. The disease had been caught early, before it affected his skin. He found a a top pemphigus expert in Boston, Dr. A. Razzaque Ahmed, one of perhaps 50 in the country. He was able to receive an experimental new treatment, reported last October in the New England Journal of Medicine, that eventually brought a remission.

Even so, over the next two years, his professional world unraveled as he had to stop work. His personal and family life experienced stresses he had never imagined. He endured severe side effects from the treatment, became dependent on pain medications, found no one who could help, and battled clinical depression and despair.

With the support of his wife, their two teenage daughters, Rachel and Sarah, colleagues and friends, he held on. The treatment slowly took effect and a few months ago, he finally was able to return to surgery.

Two promises

His illness had been ‘‘an eye-opening and life-changing’’ experience that made him question his own professional behavior and that of his colleagues. He made two promises to himself.

First, he would educate other doctors on what it is like to be so sick. That effort, which he calls Doctors as Patients, is being planned as a Web site.

And he vowed to be a more compassionate physician.

‘‘From my own experience, I now know that I never had a true appreciation of pain,’’ he said. ‘‘I realize that what I thought was empathy - based on true understanding - was sometimes sympathy, or pity.

‘‘As a surgeon, I used to think that success could only be measured by seeing a well-healed incision after surgery,’’ he said. ‘‘Now I understand that the issues and emotions related to chronic illness continue long after the stitches have been removed.’’

The path to enlightenment was tortuous. At first, he responded well to treatment with high doses of steroids, feeling ‘‘like Superman.’’ He kept working but as the side effects of steroids increased, he grew irritable, could not sleep, and became weak. Stairs exhausted him.

By August 2004, pain forced him to stop working. He did not return for 16 months and then only part-time.

He developed a severe viral infection in his esophagus caused by the steroids, which suppressed his immune system. Hospitalized for abdominal pain, he was given high doses of narcotics. He couldn’t eat and just stayed at home, isolated from colleagues, withdrawn from his family.

‘‘I felt there was no light at the end of the tunnel and that my life was over,’’ he said. ‘‘I wanted to go to sleep and never wake up. Would I ever get rid of those sores? Would I go back to work? How was I going to live and support my family?’’

The physical symptoms eased as the treatments took effect. He had a friend, a psychiatrist, who prescribed an effective antidepressant medication, Lexapro. His depression began to lift and after six months, he began physical therapy to rebuild his wasted muscles.

But now there was a new challenge: he had become dependent on pain medications, Percocet and a fentanyl skin patch, a potent opiate. No physician could tell him how to break the hold. He felt jumpy, as if he were crawling out of his skin, was feeling nauseated, could not sleep. Gradually, on his own, he weaned himself from the drugs.

More humble

A year ago, he began seeing patients part time and in September resumed some surgeries. In November, he felt good enough to announce in newspaper ads that ‘‘Dr. Konowitz is back.’’

Sometimes, he feels ‘‘almost invincible’’ again but knows symptoms could recur.

‘‘Even days when I feel great, I have a little more humility,’’ he said.

‘Doctors as Patients’: People, not commodities

Dr. Paul Konowitz came away from his battle against a rare, potentially fatal disease with a new appreciation for the plight of patients.

The experience inspired him to start planning a Web site called ‘‘Doctors as Patients,’’ an attempt to remind physicians of their responsibilities to the people they treat.

Although medical students are trained in humanism, Konowitz said the lessons tend to wear off as they become doctors and face financial pressure and insurance company rules.

At the core of his effort are these patients’ rights:

-To be treated as a person and not as a commodity.

-To have a physician who listens carefully and respects what the patient has to say.

-Timely communication of test results.

-Referrals to specialists when requested.

-Prompt call-backs.

-The ability to make appointments without unreasonable waits.

-To see their own doctor.

-To be encouraged to say what they want.

Konowitz may be contacted by e-mail at pkonowitz@... or by phone at 617-774-1717.

Sue Scheible may be reached by e-mail at sscheible@... .

Copyright 2007 The Patriot Ledger
Transmitted Wednesday, January 31, 2007