A doctor finds himself at the other end of the stethoscope
By Paul Konowitz, M.D., Medical Director of HealthAngle
Everyone who works in my office knows never to be the last patient of the day. In my hectic schedule of forty to fifty patients in a typical office day, there is never enough time to adequately and sensitively discuss a new diagnosis of cancer with patients and their families, except for that last slot of the day, when there was always as much time as needed. Luckily, most patients never realize in advance the implication of this arrangement, or they might be reluctant to show up. Denial of our own mortality is a powerful force. I should know – I’ve been the last patient of the day.
My life as a very busy ear, nose, and throat surgeon came to a screeching halt in 2004, when I was diagnosed with a rare autoimmune disease. The weeks preceding this had been alternately very happy, with my second daughter’s bat mitzvah, and quite stressful, with never-ending patient and office management issues. In sixteen years, I had successfully developed a thriving practice specializing in head and neck cancer surgery as well as pediatric ear, nose, and throat care. These were two intellectually challenging and personally rewarding subspecialties of otolaryngology. I had a great deal of personal satisfaction — I was truly making a difference. But the price of this life was a need to always work. And to keep pace I had to give up valuable personal and family time. I used to be home for dinner every night, and this had become became virtually a thing of the past. Work was all I knew. Stress had taken over.
Painful blisters in my mouth began in April. At first it was just an extremely irritating taste. Then some sores appeared in my throat, and the next thing I knew it was both painful and very difficult to swallow, and I ate less (I had wanted to lose weight to fit into my tuxedo for the bat mitzvah, but the way I lost those initial ten pounds was particularly unpleasant). I became hoarse. I began to get frequent nosebleeds from blisters forming in my nostrils. The corners of my eyes became swollen. When the mouth sores failed to improve with everything from mouth rinses to antiviral medication, I knew in my heart that something was very wrong. I had a great poker face. In fact, my weight loss led to the constant remark that I “looked great.” Only afterward, when I went to my friend and oral surgeon, did my worst fears become realized: a biopsy showed I had pemphigus vulgaris, an incurable blistering disease that can affect any mucosal surface — mouth, throat, voice box, urethra, anus, etc. — as well as the skin. All I could do was cry. All I could think about was my wife and two teenage girls. I felt as if I had been given a death sentence.
The white diet
During my dermatology rotation as a medical student, my professor proclaimed that there were two dermatologic problems that you especially never wanted to develop. I can’t remember the name of the first one. The second one was pemphigus vulgaris. Even the name is ugly. Even uglier was the appearance and feel of my mouth. Imagine that feeling when you burn your mouth on hot pizza — now magnify it by about one hundred and imagine that this never improves. Now you have a sense of this cruel and unusual problem. I immediately eliminated from my diet anything solid, crunchy, spicy, or hot. I was reduced to a “white diet” – plain pasta, mashed potatoes, fish, and vanilla milkshakes. Eating was now purely a pursuit of survival, devoid of any pleasure.
Treatment with high doses of oral steroids was started immediately. In addition, some of the lesions in my mouth needed to be injected with a steroid solution, an exceedingly painful proposition. Initially, the steroids made me feel energetic and somewhat euphoric. I continued to work despite the eating and pain issues. But reality began to emerge when the steroids soon caused severe insomnia, irritability, and a depressed mood. Little did I know this was only the beginning.
The conversion from all-knowing physician to dependent patient began almost immediately. Physicians assume they are immune from the problems and illnesses that affect their patients on a day-to-day basis. We feel omnipotent. Our expectation is that we will help the sick but never suffer ourselves. We assume that our medical knowledge will allow us to treat our own problems without fail. Because we give to others, the natural laws of fairness and justice will prevent our conversion from doctor to patient.
Like most other patients, my first stop was the Internet. Despite thirteen years of education and five years of residency to become a physician, I needed some comprehensible facts about my problem. I needed to know if I would survive and what it might entail to get there. I wanted to know “why me?” I needed to know what to do next. Pemphigus is so rare that many physicians have never heard of it, or those that are aware of it have no idea how to treat it. I myself had seen perhaps two cases during my professional career, but my recollection of treatment protocols was nil. I was beholden to the advice of others. I could not treat myself.
Unlike the average patient, a physician patient can contact and network with “world experts” to help in the decision-making process. Almost all patients rely exclusively on the advice of the physician they happen to see and will accept their recommendations without any doubt. It always amazed me that I could recommend a devastating procedure such as voice box removal to a cancer patient whom I might have only just met and they would say, “Okay, Doc, when?”
I was fortunate to have lengthy telephone discussions with two nationally recognized pemphigus experts — although they had a difference of opinion as to how to proceed. Because pemphigus is so rare, the ability to perform controlled clinical trials is quite difficult, which means solid evidence is scarce regarding the efficacy of “experimental” or nonconventional treatment. The standard and proven treatment for pemphigus is high-dose oral steroids and an oral immunosuppressive agent to prevent the production of antibodies that attack your own tissue and cause this blistering process. I was wary of this approach because of the potential long-term complications from the use of steroids (muscle weakness, brittle bones, diabetes, cataracts, a change in facial and body appearance, among other possibilities). And taking the immunosuppressives, the same drugs used in transplant patients, would increase my risk of infection. I was particularly concerned because I deal with infection on a daily basis as an otolaryngologist. Almost every patient is either wiping their nose or has a nasal discharge!
From doctor to patient
Previously unbeknownst to me, a renowned pemphigus expert was present in my own medical backyard. I learned from the other experts that he is a proponent of an alternate approach also initially involving steroids, but primarily based on the use of intermittent infusions of pooled human immunoglobulins (IVIG). The idea was to blunt my body’s ability to make these harmful antibodies, while preventing the long-term need for steroids or immunosuppressive agents. This approach was controversial not only because of its limited track record and lack of controlled studies, but also because of its very high cost ($10,000 – $15,000 per treatment). An additional drug called Rituxan was also recommended; this agent was relatively new and had primarily been used to treat patients with a particular type of lymphatic cancer. This doctor’s optimism regarding the effectiveness of this drug for pemphigus was boundless. It had only been used on a handful of patients but most had great success. This drug would cost another $40,000 – $50,000, and it was unknown whether my insurance plan would cover this. Suddenly I was thrust into the business side of medicine, no longer as a physician trying to collect from an insurance company but now as a patient (otherwise known to the insurance company as a “covered life”) trying to have my treatment paid for.
I had now become the last patient of the day. With my wife, also a physician, in attendance, we spent almost three hours discussing this protocol with the expert. I had prepared about four handwritten pages of questions, which were answered methodically and fully. My confidence in my doctor was bolstered by his extensive knowledge, warm manner, and absolute resolve that I would beat this problem. As I like to imagine my own patients regarding me, I hung on his every word and believed in him as my savior. We left that day willing to do whatever he suggested no matter the physical, emotional, or financial cost. I was willing to have human blood products infused into my virgin bloodstream. I was ready to have an experimental cancer drug pumped into my veins. I didn’t want any other opinions. I was done searching. My transformation from doctor to patient now seemed complete.
In order to receive Rituxan, I would have to see an oncologist who would be in charge of administering it. My doctor recommended a colleague with whom he had worked in the past. He was billed as a seasoned expert and someone whom I would trust without hesitation. When I arrived at his office I was ushered into an examining room, where suddenly a different physician appeared. I didn’t know who he was, what his name was, or why I was seeing him instead of his partner, the Rituxan expert. He knew little about me or my problem despite my physician’s promise that his colleague would know all the details about my condition. I was now experiencing firsthand medicine at its worst — the patient as just another anonymous case. Why would I care that I was seeing his partner when I was promised otherwise? Isn’t any physician okay? My experience as a physician told me otherwise and I eventually politely demanded to see the physician whom I was promised to see. He finally arrived on the scene and pretended as if no infraction had been committed. As a physician, I expected more. As a patient with a very painful problem, I expected a certain level of compassion and understanding.
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