Around 1982, Dr. Jenifer Rich prescribed lithium for my bipolar depression. She failed to monitor it. She should have checked lithium levels every two months, kidney function every six months, and cardiac function once a year. I didn’t know; I trusted her. In the seven years that she prescribed the drug, she rarely checked lithium levels and never checked kidney or cardiac function. Dr. Rich died unexpectedly and at home alone—on my birthday. If that wasn’t Justice, it at least closed the case.
The lithium caused nephrogenic diabetes insipidus (nephro DI), a rare condition in which the tubules in the kidneys are damaged. When plasma passes through the kidneys, the tubules are supposed to extract the water and recycle it, thus causing urine to concentrate. Normal 24-hour urine output is about two liters a day. At the time I was diagnosed in 1991, my output was ten liters.
Treated with the diuretic hydrochlorothiazide (HCTZ), and something called DDAVP that cost $10,000 a year, the level never was brought lower than four liters. The HCTZ caused constant diarrhea and chronic low potassium. A couple times every year, I would dehydrate into the Emergency Room. By 2001, despite medication, my urine output had risen substantially.
I finally figured out that physicians prescribing pharmaceuticals were the cause of most of my troubles so I stopped taking drugs. The doctors—nephrologists, endocrinologists and ER doctors—all had said, “Drink to your thirst.” The way to stay healthy simply is to keep drinking (but no caffeine) so I quit meds and started to drink. The diarrhea, dehydration and low potassium all stopped.
At the time of diagnosis, all the doctors said that the nephrogenic diabetes insipidus would not lead to kidney failure or dialysis; it was just a volume control problem. Pee a lot; drink a lot; life goes on.
Except that around 2005, I went to a new nephrologist. I have no recollection of why. In the middle of the interview he commented on my CRF. What’s that, I asked?
Chronic renal failure, he said.
I left the appointment and went to my exercise class. The instructor, who was getting to be a friend of mine, saw the trouble in my face and sent me to a corner to work alone with a balance ball and one of her assistants. I was in a rage, with tears streaming down my face. The poor assistant kept saying, “Do you want to stop? To talk? Is something wrong? Can I—?”
“Just keep working,” I snapped at him.
They’d lied to me. Again. The doctors. The nephro DI was going to kill me.
I began to learn more.
The sine qua non of kidney function is the glomerular filtration rate (GFR). In white people it should be above 60. If it drops to 30, you go on dialysis, get a transplant, or put your head between your legs and kiss your ass goodbye.
My GFR has been around 42 for several years. In November 2008 it dropped to 32, and death was upon me. You don’t need a doctor to tell you. It’s in you, of you, around you. People were dying of kidney failure long before doctors came along to tell them about it.
A month later, it went up to 41. I went to the nephrologist and he explained that, yes, you can get a ten-point rebound from diuretics. Then he realized I wasn’t taking diuretics, and changed the subject. How many other times have doctors credited drugs for what nature has done?
In May 2010, in addition to having diabetes mellitus, diabetes insipidus and chronic renal failure, I got an acute kidney infection. Urine white cell count should be below 5; mine was 542. We tried four treatment trials. The first two didn’t work and the second two made me suicidal.
Yes, brothers and sisters, antibiotics make me suicidal. My psychiatrist and I are pretty sure the explanation lies somewhere in the field of PNIE—psychoneuroimmunoendocrinology—but we haven’t been able to find any specialist to discuss the problem. So the choice is between killing myself or dying of kidney failure.
For me, that’s a no-brainer: in a showdown between body and soul, you always choose the soul. I made the decision to stop treatment. My GFR dropped to 35, then rebounded. I would guess that it’s around 32 now. I’m groggy, weak and short of breath. Having eliminated stress, heat and other possible reasons, I am left with kidney disease as the explanation.
Because of the hypersensitivity of my immune system, I cannot tolerate any medications, therefore dialysis and transplant are not options.
Thanks for spending this time with me.