Well, gentlefolk, today’s my 86th day in this isolation room in Crouse Hospital, going without proper diagnosis or any treatment.
Excuse me if I repeat myself, but I’m pretty confused and just trying to get my head straight. Sometime earlier this year I was misdiagnosed, told that there was nothing they could do for me, and I must die, so I went on oxycodone and tried to proceed with dignity. Huh, fat chance! You ever seen the Palliative Care Unit of a nursing home?
So, anyway, turns out the real problem is CFIDS, chronic fatigue immune deficiency syndrome. Because of the immune deficiency aspect, on Thanksgiving morning I had an acute reaction to the oxycodone, and went into cold turkey opiate withdrawal that night. Sweet Jesus, was that a bitch! Crouse Hospital handled it by not handling it. No doctor saw me, despite major medical complications, and the drug dependency counselor didn’t get here for three days.
So, after the worst of the withdrawal was over but I was still waking up really, really sick, I said to my fine friend—I hope—and best aide Anitra, “Crouse Hospital makes me want to die.” She reported this to the nurse in the context of trying to generate more compassionate care for me. The nurse, being a standard stupid ass, did not interview me, twisted my words, and reported it up the line. Shortly afterward, the social worker and nurse manager appeared in my room to tell me that I was being put on suicide watch.
Standard procedure requires the patient be kept under constant surveillance, which got me a security guard sitting four feet away. Also, nursing had to make 15-minute checks. After having been ignored and left alone for hours, days and weeks, Crouse Hospital was finally paying attention to me.
The first guy from Security was Jon. They were told that they were on “Patient Watch” but given no other information. They don’t ask, but are receptive to listening, so we talked and got on well. He was soon relieved by John, another nice guy. In general conversation with him, he remarked that he wished that—instead of black uniforms—they would just wear khakis and a baseball cap.
Then I got a young bastard. He wouldn’t even say hello to me. It took me ten minutes to get rid of him, but he was replaced by a young, fat, bleached blonde bitch who not only wouldn’t tell me her name—under the NYS Patient’s Bill of Rights I have the right to “know the names . . . of any hospital staff involved in your care”—but also interfered when I was meeting with a staff member from Patient and Guest Relations.
Sharon Lusk (?) is an extraordinarily kind person with whom I have been working for a couple of months. Sharon has a compassionate understanding of how I’ve been breaking down as a result of being kept in the isolation room for more than 80 days, and she bears with me. The bitch security guard chose to insert herself into the middle of the relationship and lecture, berate and bully me. She had no boundaries or sense of what her job was and where it stopped. It took me about fifteen minutes to get rid of her.
Security sent John back, followed by Jason, then another fellow. The men all had gray in their beards. They were mature, experienced, and mellow. When I got upset with other people, they just kept quiet and rode it out. I never got upset with them because they were simply nice men properly doing their job. (And, for the record, one of the guys tracked down the answer to what preceded the Carrier Dome: Archbold Stadium. I was working in Carnegie Library next door the day they started to tear down the stadium around 1980.)
Late in the afternoon the arrogant psychiatrist Biaggo (?) interviewed me and took me off suicide watch—and I gasped in pain as the Security man withdrew. After months of solitude, I’d had six hours of companionship with pleasant gentlemen, and it hurt to lose them.
The next day dawned relatively calmly. I still was not sleeping much or well, but the diarrhea was slowing down. I’d had about thirty attacks over a three-day period. I was drinking okay again, but still had no appetite. I’ve lost 18 pounds in the twelve weeks I’ve been in Crouse.
I started the day by getting on the phone and filing complaints up, down and sideways. I called the NYS Office of Mental Health, the NYS Dept. of Health, Legal Aid, and everybody that those people told me to call. I also called the police and the news media. It is obscene and indecent to be held in an isolation room without treatment. THEY JUST CAN’T DO THAT—can they?
At worst, Crouse Hospital cares only for its staff, not for its patients. At worse, it is close-minded and totally incapable of adapting when confronted by a new situation. They have no physician on staff who knows anything about CFIDS or is willing to learn. Upstate Medical Center has a rheumatologist who treats CFIDS, a neurologist who specializes in neuroimmunology, and the only immunologist in Central New York.
Upstate is one block away and connected by an internal tunnel and in a month CROUSE HOSPITAL HAS BEEN TOTALLY UNABLE TO GET ME TOGETHER WITH A DOCTOR WHO CAN HELP ME.
At best, Crouse Hospital is totally dysfunctional. Ask the nurse manager—which is where you’re told to start—and she says “I don’t know what to do,” folds her hands and sits silently. Ask the hospitalists and they variously refuse or are ineffectual or won’t take the time to figure it out. Ask Patient and Guest Relations. Ask Care Coordination. Ask any and everybody who walks through the door how to get a doctor or non-pharmaceutical treatment and they either don’t know what to do, or they don’t follow up. Once you get above the level of floor nursing, nobody at Crouse Hospital knows what to do. And nobody, ever, follows up with the patient to tell them what is or is not being done.
I was told by one person that Crouse has an exceptionally large number of volunteers providing spiritual care because they’ve discovered it’s a good marketing strategy. Prayer alone is the only way you’re going to get out of Crouse alive.
So around lunch-time on Wednesday, I opened the comments section of my blog and discovered a hateful diatribe that clearly had to have been written by an employee of the Iroquois Nursing Home. She signs herself Laughatlies. I fired off a message to attorney Janet Callahan at Hancock Estabrook, who represents the Iroquois:
“The 1500-word diatribe is a vile hate document. It contains information that could only have been drawn from my HIPAA-protected medical record. The comment contains statements that are false and judgments that are medically wrong and morally cruel.
“Some of the most grotesque errors include that I have violated HIPAA. I am not an employee of the medical care system, therefore I am not bound by the HIPAA regulations. Further, there is not one iota of substantial information that anyone is taking any legal action against me based on my blog.
“You will inform your client that they are to identify the employee who has violated my HIPAA rights, and they are to take the most aggressive disciplinary action possible, and provide me with information confirming that.”
And I asked myself: Are we having fun yet?