The chief of hospitalists listened long and thoughtfully to my tale of woe and he got it! He took over management of my case and relieved me of the line of hospitalists, one of whom had stood at my window looking down at the physician’s parking lot and commenting on his car and his garden, and keeping his back to me.
Another hospitalist sent a nurse in to tell me that I was being discharged. He had never met me; all he did was look at paperwork. Increasingly, this is true: physicians give orders without ever meeting the patient. Wise physicians—I know two—say that the only way you can make a correct diagnosis is by listening to the patient tell you what’s wrong. I now know many bad physicians who spend all their time in the nurses’ station reading test results from the computer and getting everything totally wrong.
The chief of hospitalists saw me every day and before very long he asked me if I would like a hospital-to-hospital transfer to Cleveland Clinic’s inpatient immunology department. I wept. For a decade I had been trying to find a doctor who would help me get a proper immunology work-up. Cleveland Clinic is the fourth best hospital in America. It has 1440 beds, 35,000 employees and half a dozen immunologists.
Two days later the chief came back to report that he had spent three hours on the phone with Cleveland Clinic and they would not take me on a hospital-to-hospital transfer. He bitterly said that apparently you only could get a direct transfer if you’d just had a heart attack or were bleeding out. Again, I wept. So close! So close to the doctor I needed, and now my hopes were dashed. The chief did not leave the room or mutter inanities. He simply stood, present with me in my grief.
The chief was diagnosing me with “immune dysfunction, type unknown.” Cleveland Clinic said I could come, check into a hotel, and be treated as an out-patient. In fact, I could not sit up for the five-hour trip; I would have to go by stretcher in an ambulance. I could not get myself to the bathroom or take care of myself, so I would need 24-hour aide coverage. I could not travel back and forth to the hospital without my electric wheelchair. It was all do-able—with lots and lots of money lathered on. I didn’t have lots and lots of money; I had about $800 a month, courtesy of Social Security Disability, with Medicare primary and Medicaid secondary. I could not access the hospital where the doctors I needed worked. Do you know what it feels like to have help within reach, but unaffordable? Do Americans have the right to be healed, to be made whole? Rich people get it as a privilege; do poor people not have the right to be healthy?
I have been in care since 1991 because I am too sick to work. That care has included HUD-subsidized housing, Social Security Disability, Medicare, Medicaid, home health aides, Food Stamps, medical transportation that costs about $52 round-trip, paratransit that costs me $2.50 round-trip and you, the taxpayer, another $33. You all have spent a bazillion dollars taking care of me every year: why don’t you just spent $22,000 to heal me and get me back on the rolls as a taxpayer?
The chief of hospitalists ordered an indwelling catheter. A bad psychiatrist had put me on lithium and kept me on it for seven years without ever doing any follow-up testing. The result was nephrogenic diabetes insipidus, a rare condition in which the kidneys stop concentrating urine and simply dump water from plasma directly into the bladder. Normal urine output is about two liters in 24 hours; my output was eight liters. When I could take medication—hydrochlorothiazide and DDAVP—it was reduced to four liters. When I could no longer take drugs, it went back up to eight liters a day—and night. I had to get up to pee every two hours every night for ten years. I not only had chronic fatigue but also no sleep.
Pulmonary specialists will tell you that it doesn’t matter how much sleep you get; it matters how much uninterrupted sleep you get. I had spent a decade trying to get a physician to prescribe an indwelling catheter so I could get some sleep. Multiple physicians had refused to do it because (a) they said it wasn’t “medically necessary,” and (b) it would result in a urinary tract infection. Well, in the first place, physicians, contrary to their opinion, actually cannot predict the future. There was a high probability that I would get an infection, but it was not a certainty.
Second, what kind of bloody asshole physicians think sleep is not “medically necessary?” It is during sleep that the body does most of its healing. They were denying me healing time! And these bloody assholes had all gone to medical school—and then done an internship and a residency, wherein they were reported to have worked as many as 90 hours a week, and craved sleep. They needed sleep but I didn’t? Fact: I had lived on two-hour naps for ten years. Now, when I got up during the night to go to the bathroom, I knew that it was just a matter of short time before I would fall and be unable to get up.
I asked the chief of hospitalists for an indwelling catheter so I could get some sleep and he said okay. GFR—glomerular filtration rate—is a measure of how well the kidneys are functioning. It should be above 60; mine was 32, which is stage three kidney failure. After two months with no intervention except increasingly good sleep, my GFR was up to 58. Sleep heals. Physicians are assholes.