This is the third in my series on health and aging, describing the mingling of medical, professional, social and psychological themes that mark the search for problems and solutions.
There are moments during a journey of some length when you come to a stop, not knowing which direction to take or even whether it is possible to return to the start. In my case, the pull to return, the desire to be energetic and younger was very strong. I found myself dreaming of my youth, awestruck by the exuberant energy of young people as I passed them by, imagining magical exercise routines that would restore my vitality. But these were brief excursions, and I was never far from the reality of my weariness.
Was the aging process simply speeding up? Was there some mysterious cancer that had invaded my body and captured my blood? Some of the tests lent credence to that fear since that was what they were trying to “eliminate.” God, that word is ominous, even when it is mentioned in a simple clinical way. Did I have Lyme’s Disease? Chronic fatigue syndrome?
After a wonderful hike in the Sierra Nevada Mountains, a friend and I had reentered civilization to find that the World Trade Center had been bombed. Unable to fly home to Boston, we high jacked our rental car and drove the length of the country in four days, eager to see to our families, eager to ease their fears. It was an oddly anxious and exhilarating trip. He was fifty-nine and I was sixty. There was danger in the air. What bombings might follow. We listened to public radio every mile of the trip, wondering if we’d have to get onto smaller, safer roads. And there was danger in the long hours of driving, but we reveled in our ability to do it. A few weeks after our return, though, my friend was stricken by what was later thought to be a tic born disease, a western version of Lyme’s Disease. In the fifteen years since, he has suffered constant and debilitating pain. His was a nightmare too close.
In spite of the terrors that invaded my mind, the well worn path of medical inquiry took precedence. It was clear that I was anemic. The blood samples quickly outed the iron deficiency anemia that had robbed me of my energy and threatened to capture my soul. There was a specific reason why I was weary and weak.
But what had caused the anemia? The doctors found no chronic bleeding and loss of blood to explain it. They wondered if my years of taking prilosec, which inhibits the metabolism of iron might be the enemy; so I stopped taking the wonder drug that had saved me from years of gerd. They thought that, to some extent, the radiation therapy in my pelvic region, fifteen years in the past, had created so much scar tissue that I could not produce iron in the old quantities.
One doctor, then seemingly a maverick, found a hiatal hernia—part of my stomach had moved upwards, through my diaphragm, and into my chest. The rubbing of my stomach regularly moving up and down through the diaphragm “must have caused a bleed,” he said. He proposed surgery to bring the stomach back to its original home and to secure it in its rightful place. But even he could find no bleeding from this movement, and surgery seemed like an extreme and intrusive intervention.
By then, I had heard too many and too disparate explanations. It felt like the parable of the wise men, blindfold, feeling the elephant, and confidently deciding it was a tree trunk, a huge snake, and a hillside. Each was looking at one slice of the pie and acting as if the others didn’t exist. I was growing distrustful of the doctors at the hospital where I had been treated, even though it is very a well respected arm of one of the world’s great hospitals. In my confusion, I now wanted the best. I wanted to go directly to Massachusetts General Hospital. So I called a friend, who is a prominent physician there, and she set me up with a world renowned gastroenterologist and hematologist. I also insisted that they consult with one another in order come up with a shared analysis that would lead to the best diagnosis and plan of action.
There are two, maybe three remarkable themes that emerged from this period. First, let me state the obvious: compared to most, I am incredibly privileged. I have excellent health insurance because my wife and I can afford it. My wife and I read, she far more than I, and we know much more about health and health care than most people. And I walk in the very thin air of people who know people. I could call on a friend who could call on a friend and get me an appointment with the best doctors. Not only that, they were very friendly to me, a friend of a friend. That’s privilege. Most people don’t have it. They may find great medical care but they may not. The chances are random.
The second theme has to do with the fragmentation of medicine. Even with the new information technology systems and shared files, doctors frequently do not see the whole picture. They do not collaborate closely with other doctors. They may read reports on line but they often don’t talk—they say and I believe them that there isn’t enough time. Yet it is only by talking, reading between and beyond the lines of reports, and stimulating each other’s thinking that true collaborative thinking takes place and leads to the best treatment.
These days, physicians are not as narrowly focused on single organs or bodily processes as they were a few decades ago but they also do not seem that inclined to look outside of their own areas of specialty. Friends tell me that it is hard enough to keep up with their own specialty. No doubt. Medical knowledge is exploding at an exponential rate. But it seems to me that medicine has to take the large view. How can you understand what’s happening with one organ without knowing what’s happening with the others. How can you know about the course of an illness without knowing whether people are taking their medicine, doing their exercise, eating proper food. This kind of holistic approach is rare. There are too many explanations of narrow medical focus, only one of which concerns time: how much can you learn in a ten, fifteen, even thirty minute medical interview.
This is a longer discussion that we may take up some other time. For the moment, I do want to emphasize how much burden the narrow view places on a person who is ill and relatively ignorant and confused, and, for that matter, on their primary care physicians, the professionals who know least about specific diseases.
Let’s return to my story. At MGH, my two doctors—after lots more tests—decided that they would choose the least intrusive approach. They would prescribe iron infusions, taken intravenously every six months. We would see if the infusions helped and watch the hernia to see if it was growing. Within a month or two, my energy returned.
That was an extraordinary experience. I felt much better, like myself. I was full of energy. Not only did I feel better, but I realized that my weariness was not a matter of age but blood counts. Between good medical treatment and good self discipline—I ate in an extremely health way—I could actively affect my physical well being. In fact, the healthy diet eliminated my (slightly) high blood pressure and my pre-diabetic condition. I was taking virtually no medicines and feeling great about that. My body was once more, at least for a while, my temple. And I was one of the priests.
For a while, the discipline felt terrific and aligned perfectly with my desire to feel clean and crisp on a day to day basis and to feel in control of my life. I could do something about my life. An optimistic and productive period followed. My energy returned. I felt buoyant. I felt healthy. I felt my life was back in my own hands.
Barry Dym 