At 6:50 a.m., I wake up, ring for a nurse to empty my catheter bag, go to the bathroom, and start the morning’s clean-up. As I stand at the sink, I wonder why I don’t feel better. After I got the catheter and started sleeping at night, I felt better several mornings in a row. I don’t anymore. I wake up feeling tired no matter how much sleep I get.
At 7:00 a.m., Dr. Tucker, the director of the medical service, comes into my room and tells me that Cleveland Clinic will not take me as an inpatient. I start crying. I’m very good at not crying but suddenly the tears are splashing. Dr. Tucker waits, talks quietly, understands that I am hurt and need time to deal with this. I once had a doctor take me out of her office, sit me down in the hallway, tell me that there was no further treatment available for my kidney disease, and walk away. Her name is Barbara Feuerstein and I suppose she still works at Upstate University Hospital’s Joslin Clinic. You want to steer clear of that one. She wears matching Nike head- and wristbands when she jogs. We all have different priorities.
I have only been working with Dr. Tucker for four days, but he seems to be a higher-level kinda guy. I think he’s smart and hard-working and a pretty straight-shooter. Dr. Tucker is short and gray and balding, and stands head and shoulders above the dorkheads under his command. I thank him and say I know he’s done everything he could. Dr. Tucker says that yesterday he spent three hours on the phone getting transferred around Cleveland Clinic’s administrative offices. He grimaces and says that they may have great doctors but their administration is very poor. Cleveland Clinic will only see me on an outpatient basis; to go inpatient, you have to be having a coronary or bleeding out. Dr. Tucker will ask the discharge planner to set up the outpatient appointment.
He leaves and I continue to cry. This was what it was all about: getting to Cleveland. Cleveland Clinic’s got a hotshot reputation, and an entire department of immunologists. Upstate University Hospital has one almost-immunologist, Adras Perl. I saw him. He ordered two dozen tests. He never reported the results, despite phone calls from my physician and physician assistant, and a letter from me. By the time he gave me an appointment six months after the tests, I was too sick to get to the hospital.
Dr. Tucker came to see me after I fired one of his dorkheads. We talked, and he proposed that I be transferred to Cleveland Clinic; I agreed and he’s been working on it ever since. Yesterday’s dorkhead-hospitalist told me that Dr. Tucker had gotten me into Immunology and was talking to “a” doctor. There’s an immunologist out there with a name and a face who knows my name and has agreed to see me. No, says Dr. Tucker, he wasn’t talking to any specific doctor; he only could talk to Administration.
Earlier this week, my friend from Michigan—male, and a medical social worker—got half an hour of phone time with a doctor at Cleveland Clinic. How’d he do that, I wonder?
I go back to trying to get cleaned up—hard to brush your teeth when you’re crying—and Dr. Ghaly walks in. “Eh,” he says, “You are important. Big doctors are calling me.” Dr. Tucker spent half an hour on the phone with him, trying to understand the history and present of me and my medical needs. And the endocrinologist called him.
She is the best endocrinologist in the county and she came to see me on Friday. Endocrinology is the specialty that treats both diabetes mellitus and diabetes insipidus, the doctor-induced kidney disease that’s causing my chronic renal failure. The endocrinologist and I are both strong, intelligent women and it only takes us ten minutes to agree that there’s nothing she can do to help me. Then she makes an emergency phone call to Dr. Ghaly, trying to get him to get me to take drugs.
Why, oh why, can’t they get it? To each doctor, one at a time, I try to explain: I can’t take drugs. They make me sicker than the disease they are supposed to treat. I think it’s the immune system, but there are no immunologists here who will check it out. Technically, it is not an allergic reaction because allergies occur when the immune system is producing antibodies. My problem is hypersensitivity, which is a different kind of immune system problem. I stick to the facts and the facts are that I am not allergic to drugs—but might they possibly understand if I say that I am? “If you know that your patient is allergic to penicillin, would you insist that she take it?” No? Then why do you keep insisting that I take drugs?