In the fall of 1992, my 1-year-old granddaughter developed classic erythema infectiosum. Her face took on the typical "slapped cheek" appearance, and she developed fever and malaise. I suspected that her parvovirus B19 would in all likelihood infect her grandfather, and it did: I developed fever and severe joint pains. Even after these symptoms disappeared, however, I felt poorly and could never seem to recover from an increasing sense of fatigue that persisted and even worsened. In 6 weeks, my hemoglobin concentration decreased to 10 g (possibly due to the parvovirus), and I lost 22 pounds. I had no appetite, despite my wife's best efforts to provide me with my favorite dishes. I simply could not eat more than several hundred calories a day.
I was hospitalized with a working diagnosis of possible pancreatic cancer. I was cachectic and extremely weak. The only clinical finding other than the recent weight loss was a systolic blood pressure of 80 mm Hg, which responded to vigorous hydration. This prompted a very astute clinician to think that the problem might be metabolic, and he called for a cortisol level. It came back at just about zero. Several studies later, an enlarged sella with a 2.5-cm mass was diagnosed and I was prepared for a transphenoidal hypophysectomy.
During this time, my missing hormones were replaced and I developed a ferocious appetite. But as I was celebrating the joys of food, I began to lose vision in my left eye. This was frightening, and none of my physicians were able to reassure me that it would not be permanent. Before my surgery, I quietly began to make "deals" with the Deity. Most of them, surprisingly, did not involve my survival but instead were concerned with my rapidly failing eye-sight.
The neurosurgery was successful, and a large, friable, hemorrhagic, benign adenoma was removed. Because of bony erosion, the sella floor was rebuilt. When I awoke, my vision had miraculously returned. The neurosurgeon explained that the mass had been pressing on my left optic nerve. My physicians then transferred me to the intensive care unit, where I was lashed to the bed by three intravascular lines, a catheter, and several chest leads and monitors.
Despite wonderful nursing, I began to lose my sense of night and day. With two enormous nasal drains (which resembled small trumpets) installed, I looked and felt like Miss Piggy, the porcine starlet of "The Muppet Show." My neurosurgeon stressed the importance of my torso and head remaining upright for several days to let the newly created floor of the sella meld. New fears crept in. Did I have postoperative diabetes insipidus? Was the tumor really benign? Was I developing a cerebrospinal fluid leak? If I slept with my head tilted, would my new sella floor fall off? Irrational, yes, but specific fears that only a physician could conjure up.
Although my family, physicians, and nursing staff were very caring, my real-time 24-hour companion was the television set. I had never realized how important that much-maligned device is to a bedridden patient. It shut down once, shortly after midnight, and had it not been rapidly repaired, the loss would have been akin to that of a close relative. The early hours of the morning can be very lonely.
After several days, I was transferred to the neurosurgical floor and the drains were removed from both nasal passages. I began to feel very lucky and became quite optimistic. The battle had been won. Thanks to modern medicine and surgery, I was happily anticipating my return to work and my resumption of a fairly normal life. But this was not to be.
Several weeks after I was discharged, I returned to work. My physical world then started to come apart. I was extremely fatigued to the point of severe nausea for many hours during the day and into the evening. The exhaustion was similar to what I had experienced as an intern when I went without sleep for 36 or more hours; now, however, I slept several hours a night yet never felt refreshed. Opening jars and bottles became impossible for me. Carrying anything of significant weight was beyond my ability. The stairs to the garage and basement became increasingly difficult to negotiate, and concentrating and retaining information required tremendous mental work. I tried an exercise program, under supervision, but was unable to sustain even the simplest regimen. I could not sit and play with my granddaughter for more than 10 or 15 minutes at a time. I realized that I was clinically, severely depressed. This went on for months without any remission, despite treatment with antidepressants and continued attempts at graded exercise. I was devastated! Although I was in my mid-sixties, I felt like a frail octogenarian.
Finally, during an executive committee meeting at the department of medicine at Columbia University, one of the senior endocrinologists told me that what I was experiencing had been well documented: I probably needed growth hormone. I was stunned. Growth hormone was for children with growth problems. How could lack of a hormone that diminishes naturally with age possibly be causing these crippling symptoms?
With great trepidation and very little faith, I applied for enrollment in a double-blind study of patients without growth hormone. Initial provocative testing revealed that I was an acceptable participant. After instructions from the test team, I began injecting myself with what was either a placebo or actual growth hormone. Within 3 weeks I knew I had drawn the bottle with the "genie": The nausea disappeared. In 3 more weeks, I was once again able to open jars and bottles. My ability to read and retain material, both professional and recreational, returned completely. I could now sit in a chair or on the floor and play for substantial periods of time with my very active granddaughter. As the months progressed, my strength came back, the depression disappeared entirely, and I felt as if I had regained my rightful age.
That was the most terrible voyage of my life. All of my varied symptoms and serious functional difficulties had one simple cause: complete absence of growth hormone. Happily, I live at a time when basic science and genetic engineering have given me back most of the joy that I thought I had lost forever. Of course, the story of this journey would not be complete without noting that I was extremely fortunate to be working with very sophisticated clinicians and researchers. Without their input, I would not have recognized the syndrome that I was suffering from and would not have been directed to a definitive protocol. I can only hope that increasing awareness of this problem will permit more patients to obtain early diagnoses and definitive therapy and return with dignity to their normal, productive lives.