Immune dysfunction falls into three categories: immune deficiency, which includes AIDS; autoimmune, which includes multiple sclerosis; and hypersensitivity, which nobody has ever explained to me. I am grossly hypersensitive. In fact, I am so hypersensitive that I react to all medications. I cannot take any drugs because the side effects are worse than the illness they’re intended to treat.
Doctors can’t deal with this. They live and die by their prescription pads. Take away the prescription pad and you’ve effectively made the doctor impotent. This causes doctors to become really, really nasty. Consequently—after going through more primary care physicians than I can count—I no longer have a primary care. My psychiatrist and his med/surg physician assistant take care of me.
Four months ago, I got a kidney infection—one so bad that it made my psychiatrist say “omigod” three times. Considering I have chronic renal failure, this was not a good thing. Cranberry juice and acupuncture didn’t work. The illness would rapidly lead to complete kidney failure and death, so we had to do something. We—psychiatrist, PA and me—put our heads together and decided on a trial of the antibiotic Macrobid.
I took a very low dose for a week, and it helped but didn’t resolve the infection. I took a higher dose for three days, then got so sick that I had to stop it. I still had some infection, which was sapping my immune system and rolling over into other problems. I called my case manager and proxy/trustee and we pre-paid my funeral costs, then I tried another regime of the low dose of Macrobid. Within three days, I couldn’t tolerate it anymore.
By now, my world has shrunk from a five-mile radius to a one-mile radius. I’ve had to give up my treadmill. I’m so tired that I’m sleeping ten hours a day, and the shortness of breath has become constant and severe. I have a low-grade chronic kidney infection. And nobody can explain to me why my immune system pitches a fit if I take drugs, so I go back on the Internet, which I do every few years, and research immunologists again.
This time I come up with a world-class rheumatologist who has a Ph.D. in immunology and is working at the aforementioned teaching hospital nearby. I get an appointment, show up, and am interviewed by a resident. When I tell him I have shortness of breath, he says, “And anxiety? You have palpitations and shortness of breath?” No, asshole, I do not have anxiety or palpitations. I am not neurotic and you bloody well better listen to what I say, not the bias inside your head.
When the world-class immunologist shows up in the treatment room, he talks to the resident, not to me. He barely looks at me. All he knows is what the resident tells him, and the resident got it wrong. The immunologist orders two dozen tests and tells me to come back for his first-available appointment, which is in four months. This is later changed to six months; apparently he’s going on a lecture tour or something. (The hospital’s motto is “Knowing Changes Everything.” So if I don’t know the test results, nothing changes.) I write to the doctor and the PA calls him—twice—and he ignores us both. The psychiatrist looks sour and shrugs.
Then Ginger and I meet in the bar of the up-scale motel across the street from where I live. We order New York State wine because she believes in supporting the local economy. Ginger is a petite woman with soft, wavy white hair who is in her eighties and still practices social work, including running a group for men who are sexual abusers.
When we exchange the traditional opening remarks—“So how’ve you been?”—I say that I’ve been very short of breath. Ginger says she was taking Macrobid and also was short of breath. The local doctors worked up her shortness of breath to no avail, so Ginger’s daughter brought her to Boston and had her hospitalized. (It should be noted at this point that Ginger’s daughter is a Harvard M.D.) After appropriate testing, which included some sort of chest pictures that she can’t remember, Ginger was diagnosed with pulmonary fibrosis.
So I go home, boot up the old computer, go to “ASK” and type in “How diagnosis pulmonary fibrosis,” and it replies “CT scan.” I take all the information to the PA and she orders a CT scan. Yesterday I had the scan and today I went to the psychiatrist who confirmed the diagnosis and said he would call his good friend, the good pulmonologist in the bad group.
Pulmonary fibrosis is scar tissue in the lungs. It is an autoimmune disease. I have drug-induced pulmonary fibrosis. The lithium caused it and the Macrobid exacerbated it. Idiopathic pulmonary fibrosis is the equivalent of a diagnosis of cancer, but I don’t have idiopathic pulmonary fibrosis—I just have the idiots who couldn’t diagnose any kind of pulmonary fibrosis.
It was caused by drugs, and in ten years, four pulmonologists and four rheumatologists couldn’t diagnose it.
It took a lady in a bar to give me the information I needed to go on the Internet and diagnose it myself.
Moral of this story: Spend more time in bars, less time in doctors’ offices, and don’t take drugs.