So, not being complete morons, Stevie and I came up with a plan: we called an ambulance and took me to the hospital—not St. Joe’s! We had had enough of their totally botched care, not to mention the absolute absence of a viable discharge plan, so we went to Crouse Hospital.
When the ambulancers wheeled me into the Emergency Department, a woman behind a desk looked up, pointed, and said, “Room [whatever].” On my last trip to St. Joe’s, the ambulancers stood in line with my stretcher for one hour and five minutes before we were pointed to a room. A friend observed that St. Joe’s, with its brand new Emergency Department, is a very pretty place—but it doesn’t work.
So at Crouse I got put in the room where they can deliver your baby, sew your leg back on, or do open-chest heart massage, and the staff went to work to figure out who I was and what was my problem. My problem was that I no longer could be maintained at home alone; their problem is that they don’t do discharge planning from the ER.
We did the nursing thing, then the resident came in and we talked for a few minutes. He left, bright-eyed, bushy-tailed and all happy and excited that he got it—he knew what to do. Unfortunately, he hadn’t heard the whole story. When he came back, we gave him the whole story: lithium poisoning, immune dysfunction, can’t take any meds. Repeat after me: I cannot take any medicine for anything.
The resident, now looking deeply and darkly troubled, went to find his attending, who was Dr. Mason (I think; henceforth, all declarative sentences involving proper nouns should be deeply suspect; I no longer am clear about things). Dr. Mason seemed to be nice, smart and open-minded, which works really well for me. Also, I think he knew how to treat a patient. There is a world of difference between treating a disease and treating a patient.
He said the social worker would be in to interview me but she didn’t come. When Dr. Mason came back, he said, yeah, that’s because we’re coming up on closing time in the offices and she’s hard at work talking to other people, other offices, before they go home. Believe me, he said, we are busy talking about you and trying to come up with a plan.
Dr. Mason then said that I had a urinary tract infection and my blood sugar was around 350. He proposed that I be admitted—at least to the Observation Unit—and have a saline IV to see if we could dilute my blood sugar, and start an IV antibiotic.
I shook my head negatively and said, “No, no, no—I don’t do IVs or drugs.”
To which Dr. Mason replied, “Then we’ll have to send you home because we only can admit if we’re treating.”
To which I replied, “Right, I’d like an IV and some antibiotics.”
After another somewhile, Dr. Jishi arrived on the scene. She is a hospitalist and mother of young children so she works one week on, two weeks off. Dr. Jishi told me she had come to admit me. “Where,” I asked, “Observation or Medical?”
“I don’t know,” she said, which was helpful. Any doctor who claims to know what to do with me clearly doesn’t understand the problem.
The problem is that I was poisoned with lithium by a doctor who kept me on it for seven years but never monitored it. We know that the lithium caused the kidney disease. What we do not know is what the lithium poisoning did to my immune system. There is no medical literature on the effect of lithium poisoning on the immune system. I have the symptoms of multiple sclerosis, lupus and scleroderma—all autoimmune diseases—but not the actual diseases. I have something like M.S. How’s that for a diagnosis? “Something like.”
According to the last best doctor, I have “immune dysfunction, type unknown” which results in hypersensitivity, particularly to medicine. I can’t take anything for anything. This means, first, that doctors don’t know how to treat me: “Glucose is 484 and she can’t take insulin—WTH?”
Second, it means that—absent a diagnostic code—the so-called health care system has no idea where I fit. I am alert, intelligent and articulate—and physically totally crapped out. I can feed myself; I cannot bathe myself. I can tell wonderful stories, but if requested to fill out forms or plan menus for three days, I break down in tears.
Should we put her in a nursing home? Well, how can we? The occupants of nursing homes are pretty close to brain-dead; Annie isn’t. How about assisted living? She’d be alone in a small apartment, which she already is. She needs community—but she’s bed-ridden, too crapped out to travel far. Can she walk as far as the door of her room? Yes. Down the hall? No. Electric wheelchair? Well, sorta-yes sorta-no. Because of the high blood sugar levels, Annie now has trouble getting through doors, managing her catheter tubing—you run a 250 lb. wheelchair over a catheter tube then you damn well better have somebody around to sort out things ‘cause Annie can’t.
So after appropriate discussion, Dr. Jishi decides to admit me to a medical floor. Good move, Jishi.
Then they-all decide to move me out of the major having-a-baby-reattaching-a-leg-cardiac-massage room into Holding and, yes, there actually is a sign that says “Holding.” What next? “Carrying?” “Waiting?” “Doing?”