Struggling to be a full-time doctor and patient

By Paul Konowitz, M.D., Medical Director of HealthAngle

This is the second installment in a series about Paul Konowitz’s personal and professional struggles as a surgeon with a life-threatening disease.

I was sure I would conquer my pemphigus. I would continue to work and maintain my financial productivity. There was no choice. No one was offering me a free lunch; I would have to juggle my treatment and work schedule. My solution was to compress the same number of patients and surgical procedures into even less time. I would have to continue to be Superman despite my problem. As I was soon to learn, I was becoming my own worst enemy.

I had decided to schedule the first of my IVIG treatments on an “office day,” to avoid canceling patients who were scheduled for surgery. Most patients receiving IVIG have the treatment divided into three infusions on three separate days during a single week, to avoid potential complications of the treatment and the severe headache that often follows these sessions. But “Superman” was going to receive the treatment over two days instead of three to avoid missing any time from work. I would continue to see patients, perform surgery, and be on-call, covering four busy emergency rooms every fourth night and every fifth weekend. I would not let this affect my home life. This problem would be a nuisance that I could handle with one hand tied behind my back.

The day finally arrived when I was to start the IVIG. By now I had lost about fifteen pounds, could hardly eat, and was sleeping only a few hours per night. My friends and family would often receive e-mails from me in the middle of the night, and I no longer “looked great.” I was scheduled to begin treatment on a Monday afternoon, so I started seeing patients in my office at 7:30 am instead of the usual 8:30 am and increased my usual level of stacked bookings. I constantly had my eye on the clock, because I had to be finished by about noon in order to drive the 30 to 45 minutes in traffic to my physician’s office. The stress could not have been worse. I needed more air conditioning, as I was working up a sweat; patients and my staff had to put on their sweaters even though it was July. Everyone knew to stay away from me. Goodbye, Dr. Jekyll; hello, Mr. Hyde.

In the end, I arrived on time despite a last-minute patient with a severe, almost uncontrollable nosebleed. I was ushered into a treatment room that consisted of a series of six La-Z-Boy-type lounge chairs arranged in a loose semicircle. They were occupied by elderly and middle-aged people attached to infusion pumps and in various stages and positions of sleep. In my professional capacity I have stuck needles not only into veins and arteries but also into necks, tongues, ears, noses, and various other body orifices where you would not like a needle placed if you were the patient. I suddenly realized that despite the ease of doing this to someone else, having an IV needle stuck into me was something I would not enjoy. I had the veins for it, but I was a coward. After some cajoling by a very skilled nurse, the IV got started and I was on my way. I was attached to a portable pump like the other patients and the IVIG was started. I too went into one of those chairs and assumed the standard position.

Every morning during this time, I would wake up and think that I must have been dreaming that I was really sick. After a short time, however, I’d come to realize that it was true. I had that same sense sitting in that lounge chair. Could this be real? Was I really the patient receiving an infusion? I should state that I have spent my whole life avoiding sitting on a toilet seat in a public restroom. Now I was experiencing something worse: antibodies from blood serum from over two thousand anonymous people were pooled together and filtered for hepatitis, AIDS, etc., and were now freely running through my veins. I would never again be able to donate blood. Who knew what was lurking in that blood product that might evade the initial filtering process? Thereafter, I affectionately called this treatment my “contamination.”

Helped by a good doctor

One of the best pieces of advice that I received during this ordeal came from a very good friend who is a talented plastic surgeon. He had watched as a poorly coordinated medical team inadequately cared for his older brother, who eventually died in his late forties from a malignant brain tumor. His advice was to have one physician, whom you have ultimate trust in, to be the coordinator or quarterback of your medical care. Today’s medical environment is one of fractionation and subspecialization. Many general medical doctors practice “triage medicine” and quickly off-load their patients’ problems to someone else. Physician-to-physician communication is incredibly poor. I would sometimes see the most complex patients without even a courtesy call from their referring physician. I always assumed that it was not because of a lack of caring but more likely that they were so busy like me. Nonetheless, this often leads to a disconnected type of medical care, ultimately resulting in a confused patient who may end up receiving less than the best care that is possible.

I was fortunate to have an internist, whom I had been seeing over the years for an annual routine checkup (I had never even been on any regular medications), who cared about me and was eager to accept the role as my physician in charge. Although he was far from an expert on pemphigus, that was not what I needed. I needed and received a person committed to me not only as a patient, but also as a fellow human being. He would be in charge of all my medical issues and coordinate any additional input that was needed. Most of all, he listened to me. He listened to my wife. He would be there for me, time and again.

Very quickly, I realized I needed one of those pillboxes with the days of the week written boldly on top. I used to laugh at these and think they were for confused elderly people. But a Nobel Prize should be awarded to whomever came up with this simple idea. I was now on ten pills a day for everything from the pemphigus to high blood pressure, and without that box, it would have been impossible to take all the medicines at the right times. I was now a regular at my local pharmacy; you know you have an unusual problem when they need to send out for some of your medications. I was fortunate that my insurance covered these medications, as well as the IVIG and the Rituxan which was to come, and I developed a new appreciation of the uninsured. As a physician, the uninsured were often a burden that I was obliged to deal with. The hospitals never minded because they received payment from the state’s uncompensated-care pool. But the physicians had to provide any type of care, ranging from simple to complex, for no reimbursement for time or materials. All of that now seemed inconsequential when I thought about the uninsured with pemphigus. How would they survive? Who would provide the hundreds of thousands of dollars of medical care that they would need? We will all ultimately need help sometime in our lives — I was lucky at the moment to have a caring physician in charge and the insurance means to pay for my treatment to come. I never thought I would measure luck in this way.

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