medicine's blind spots

When I was hospitalized with a MRSA infection, I was seeing doctors and other health specialists, not counting the ward nurses, literally by the dozen. I needed surgery on my foot to clear out an infection there, and my lungs were also infected, showing “cavitary lesions” (basically holes, which for the most part filled in again after treatment). It was not clear at first that the infections were the same, since the necessary intervening pathways—the blood and the heart—showed no infection by the time the lung damage was found. So I was talking to orthopedic surgeons, cardio and infectious specialists, pulmonologists, practitioners from my primary care team, and doubtless others I can’t remember; San Francisco General Hospital seemed to stint no resources in a multidisciplinary approach to figuring out what was wrong with me and how to fix it.
Among all these doctors, one stands out: Dr. X checked in with me regularly, often several times a day. He made sure I was getting all the information that I needed from the various teams. He explained how the thinking of the teams was progressing, where there was consensus and where uncertainty. Uniquely among the doctors, he repeatedly encouraged me to sit, stand, and walk in order to avoid the pneumonia, blood clots, and other ills that can come from being too horizontal and too passive for too long. He gave me tips on finessing a refractory pharmacy that wouldn’t provide some of my drugs in the low doses that long experience and careful observation have proven to be right for me. He followed investigative paths that others overlooked. In short, Dr. X was smart, curious, analytical, investigative, practical, empathetic, and clearly committed to the best outcomes for his patients.
So what does the infection, and what do the virtues of Dr. X, have to do with my diabetes?
The infection entered through an ulcer on my foot. For a long time, we have been considering these ulcers to be “diabetic”. Based in part on what we learned through the hospitalization, and in part on my history, and in part on the fact that I have well-advanced peripheral neuropathy that does not correspond to the level of blood glucose control I exhibit, it is probably more accurate to think of the ulcers as neuropathic, and the neuropathy itself as idiopathic—meaning we don’t know what causes it. It is possible that the diabetes may be complicating or exacerbating any neuropathic effects. The hospitalization also taught me, indirectly, that I have stance and gait issues that definitely intensify any damaging effects of the neuropathy.
Dr. X, because he seems to share them, illustrates the pervasiveness of two blind spots in medicine:
  • Like my primary provider, Dr. X refers to glucose levels for good diabetic control as "normal", when in fact normoglycemia differs from "good control" levels by a significant 25 mg/dL (or so) of blood glucose: roughly half a percentage point on the Hb A1c scale. In my case, the distinction may mark the difference between my feet being ulcerous, or subject to Charcot collapses, or healthy. (To be fair to Dr. X, we never had a conversation in which I tried to pin him down on this distinction.)
  • Faced with well-controlled diabetes, Dr. X. says it is “not unreasonable to question the diagnosis”.
Well, yes, it is unreasonable:
I’ve been diagnosed for seven years, and was arguably symptomatic for at least four years before that. I have measurable insulin resistance. I can readily show you that my blood glucose level will respond to a half cup of white rice dramatically differently than would that of a non-diabetic. If my blood sugar levels are allowed to rise unchecked, my weight zooms out of control and I get lethargic and stupid. My skin is fragile, will break under mild pressure, and once broken is slow to heal. I’ve lived for eleven years with spates of ulcers, including weeks of visible meat (my own) and most recently a slow-healing but consistently “clean” ulcer that suddenly erupted with a life-threatening infection. And yet the medical mind—absent a drug, absent a medical “magic bullet” that it can point to and congratulate itself on for “fixing” me—questions the diagnosis before it expresses any curiosity about what I’m doing right to keep my numbers as good as they are.
Consider two other conditions I have:
  • High blood pressure—Even when sick, hospitalized and under severe stress, my blood pressure readings were virtually all normal, controlled by an ACE inhibitor.
  • Dyslipidemia (unhealthy levels of blood fats, loosely termed “high cholesterol”)—This is was [at the time of this post] controlled with statins, and my current numbers are actually pretty good, in some cases better than the standard targets.
If I were to propose to a doctor, based on these numbers, that I was no longer hypertensive or dyslipidemic, or never had been, I’d be quickly corrected: I have the conditions, they’re just under control.
So why should the medical mind, seeing diabetes under control, leap toward wishing it retroactively away? Why are the precise calculations I perform each day as I manage my diet of less interest to my caregivers than finding and adjusting the correct dose of my ACE inhibitors and my statins?
This must change.