Hundreds of Interlaced Fingers

by Vanessa Grubbs, M. D.

  Women with chronic kidney disease have issues with infertility too. They often have irregular menstrual periods and don’t ovulate. As the kidney disease worsens, so does the infertility. It is rare for a woman with advanced chronic kidney disease to get pregnant. And it’s even rarer for one with end-stage kidney disease on dialysis to get pregnant. When it does happen, the women often have severe high blood pressure and only about half of the babies survive. The babies that do survive are usually born two months early—in spite of the patient enduring dialysis six times a week instead of the usual three. After transplant, pregnancy is much more common, but only at about a third of the rate of women without kidney issues.

  I still had one normal kidney, so I fully expected to get pregnant. We went to an infertility clinic to find out why it wasn’t happening.

  Marguerite Cyders appeared to be in her early fifties. She had a kind smile that you could see in her eyes and a reputation for knowing what she was and had been doing for the past couple of decades. She laid out a clear plan for us. Her plan involved dozens and dozens of injectable medications that our insurance wouldn’t pay for, so money that was being saved for a house was redirected to making a baby instead.

  After weeks upon weeks of shots into my belly fat and booty, she retrieved eggs from my advanced-maternal-age ovaries. Robert’s swimmers numbered on the low end of average and looked normal, but Cyders didn’t want to turkey baster them into my uterus and risk the added burden of a twin (or more) pregnancy on my one kidney. The lab combined my eggs with Robert’s sperm to make us a total of nine embryos. She planned to place two of the four-celled embryos inside my uterus to start, freezing the rest.

  Moments before the procedure, she showed us a picture of them. It was love at first sight. These were our babies. I wondered who each might be. Which would have Robert’s eyes. Which would have mine. His love of reading. My sense of humor.

  But a couple of weeks later I got my period. Neither embryo had attached to the walls of my uterus. Cyders’s eyes mirrored the disappointment in ours. Sometimes it just didn’t work, she said. All we could do was try again. We had seven more embryos.

  After another round of shots for weeks to get my uterus ready for pregnancy, Cyders tried placing three embryos. A couple more weeks later I got my period again. And again she said all we could do was try again. She placed the remaining four after yet another round of shots. The risk of a multiple pregnancy had proven far less an issue than getting pregnant at all. But my period came. Again.

  And my soul ached.

  We had gone through our savings and had no baby to show for it. But even if our money had no limit, there would be no more IVF. I could no longer bear the painful shots only to be left heartbroken weeks later. If we got pregnant, it would have to be on our own. Unlikely, we knew, but still we tried and hoped.

  “You should be happy, you already have one baby,” one of my nephrology fellow peers said one day as I jokingly whined about feeling my advanced-maternal-age eggs dying. Oh, there goes another one! She might as well have hissed, “Stop being greedy—it ain’t like it’s kidney failure,” to help me regain my perspective.

  But she was missing the point. I didn’t just want another baby. I wanted a do-over. I wanted to have a baby with people who loved me around. I wanted to make a baby with someone who loved me. I wanted a baby with My Robert.

  Robert wanted a do-over too. A chance to have a baby with a woman he loved. A woman he wanted to be a family with.

  “We found each other too late,” Robert said, trying to ease my pain. And his.

  It has been years, but part of me has yet to come to terms with the fact that my dream of a little combination of Robert and me would never come to be. I know it ain’t kidney failure, but it feels like it in the sense that I get a monthly reminder that a part of my body has failed me.

  12

  Zebras

  It was the late 1940s when Dr. Theodore Woodward, a professor at the University of Maryland, first said to his medical interns, “When you hear hoofbeats, think horses, not zebras,” because in Maryland one was much more likely to see a horse than a zebra. Most of adult nephrology are horses—chronic kidney disease, with two-thirds of it caused by high blood pressure and diabetes. But it is the exotic, relatively uncommon things that can go wrong with kidneys—the zebras—that bring young doctors to nephrology. The zebras make the kidney sexy.

  It was a zebra that brought Robert into my life.

  It was the beginning of the summer before sixteen-year-old Robert’s junior year in high school—a few weeks before he learned he would soon be going to the pediatrician with his own child—when Robert sat with his mother in the waiting room of his pediatrician’s office. He needed a routine sports physical. Football season was about to begin.

  Robert had been going to Dr. Philipe Santoyo’s solo private practice since he was eight years old when he developed allergies to his cat, his guinea pigs, pollen, and grass. At least that’s what the reactions to some 150 potential triggers injected just under his skin up and down his back had revealed. Weekly allergy shots followed until he was fourteen.

  “Robert Phillips,” the nurse called from the swinging door by the front desk less than five minutes after they sat down.

  Robert and Ginger quickly rose from their seats and followed her through the swinging door and down the hall. They paused at the scale, where she checked Robert’s height and weight. A growth spurt in his thirteenth year that left him eight inches taller and ninety pounds heavier meant he was no longer that twig of a boy who frequented the racetrack with his grandparents.

  “Come on in and have a seat,” she said as she ushered them into exam room 2. “The doctor will be right with you.”

  Ginger took a seat in the chair and Robert hoisted himself onto the white paper stretched across the exam table.

  Dr. Santoyo strolled in almost immediately, Robert’s clinic chart in hand. He was short, not much taller than Robert before his growth spurt. He shook Robert’s hand firmly, then turned to Ginger.

  “Hello, Mother,” he said flatly in a thick Castilian accent. He was nice enough, Robert thought, but he had never known him to waste time on small talk. Ginger smiled and nodded hello.

  “What are you here for today?” he asked, and Ginger handed him the sports physical form.

  He took the form and a seat on the rolling stool and crossed his legs. Robert, already a budding metrosexual, noticed that the doctor was wearing his usual sports coat, shirt, and tie under his unbuttoned white lab coat with slacks and expensive loafers. This day he wore Ferragamo loafers. A sad salt-and-pepper comb-over made him just shy of dapper.

  “OK, let’s go through this,” he said, looking at the form through the glasses resting on the tip of his nose.

  After Robert’s reflexes were tested, his lungs heard, and his finger pricked, Santoyo handed him a clear plastic cup. “Pee in this cup and leave the sample on the tray in the bathroom.”

  Robert walked to the bathroom to do as he was told. A layer of foam floated on top of his yellow urine sample. It looked like a freshly poured beer, but he thought nothing of it; other boys he knew had said theirs bubbled up in the toilet some as they peed too. His bubbles just never went down. He left the sample on the tray. A basic urine screening test was a standard part of sports physicals, and Robert had been peeing in cups every year for years for this purpose.

  The nurse retrieved the sample with latex-gloved hands and placed it in a plastic bag to go to the lab. In the lab, the technician would take from the dipstick bottle one narrow strip of lightweight cardboard, all but the top inch stippled with ten evenly spaced squares, each embedded with a specific chemical that would change its color if a particular substance, like blood or protein, was present in the urine. She would submerge all the squares into Robert’s pee, just for a moment, then lay it on the paper towel on the counter, giving any chemical reactions time to occur. She would come back to it in two minutes to see if any of the little
squares had changed colors. One had.

  Two days later, Santoyo called Ginger and said he needed to see them again.

  “What’s wrong?” Robert asked as he walked into the doctor’s office, after Santoyo had spoken with his mother alone. He was more alarmed about meeting in his office and not an exam room than he was about the doctor talking to his mother first.

  “We found a lot of protein in your urine,” he said, then looked at Ginger. “Mom, I want to send him to a nephrologist.”

  This was the first time he had heard that word. He rolled the syllables around in his mind. Ne-phro-lo-gist. This didn’t sound good.

  “A nephrologist is a kidney doctor,” Santoyo explained. “The kidneys make urine. I just want him to run some tests to find out what’s going on.”

  Robert was aware of his mother watching him.

  On their way out, nephrologist’s office number in hand, Ginger asked Robert what he was thinking. He shrugged, feeling like he didn’t know enough to feel any particular way about the news. He looked at her to gauge how worried he should be. If she was worried for him, it didn’t show on her face. This was just some more tests and doctor visits. He was used to that.

  About two weeks later, Robert and Ginger made their way down a path toward the nephrologist’s office. A dialysis center was on their right. Through the long window spanning the side of the building, Robert could see a row of people sitting in big chairs. Some were asleep. Some were watching televisions mounted to the ceiling. Everybody looked old. Everybody looked miserable. Everybody sat next to a machine that they were hooked up to. The machines were big and loud.

  His eyes stretched big and he turned to his mother and said, “If I gotta do that, you might as well kill me. I ain’t doing that.”

  “Don’t say that,” Ginger said in a stern mother’s tone, never wanting to imagine a time when her baby was not around. But then, softer, with hope in her voice, “Maybe you won’t have to.”

  “Philipe said you had some protein in your urine,” Barry Gorman said.

  Robert nodded. He liked Gorman right away. He liked the casual way Gorman said “Philipe” instead of “Dr. Santoyo” and how instead of a white coat he wore his stethoscope draped around his neck like a horseshoe. He liked Gorman’s bubbly personality. It matched his head full of lush salt-and-pepper hair. A clean-shaven face and tie were all he appeared to have in common with Santoyo.

  “I want to find out what’s going on,” he added, and went on to ask a lot of questions and examine Robert.

  “It could be nothing. It could be something,” Gorman said after he finished examining Robert and after all his questions had been answered. He found nothing in particular that made him worry a zebra was afoot. With the exception of allergies to pet dander and pollen, Robert had been a normal, healthy kid. There was no blood in his urine, which along with the protein would definitely mean something. There was no pain or repeated bladder infections that would suggest he was born with abnormal kidneys. There was no swelling at his ankles. No one in his family was known to have a kidney problem. And for every ten kids with protein in their urine, it would be nothing to worry about in nine of them.

  Nothing could mean that the urine was just concentrated, a deep, deep yellow, a sign that the kidneys are holding on to as much water as possible in a body that isn’t drinking enough of it. The amount of protein in a very concentrated sample of urine would seem high, but once the concentration of the urine was accounted for, the actual protein content would be normal.

  Nothing could also be a small amount of protein in the urine, trace or 1+ on a scale that goes to 4+, barely turning the color block on the dipstick from pale yellow to a light shade of green. After all, the interlacing fingers covering the glomerulus are not perfect—up to 150 milligrams of protein may slip through in a given day and still be normal. His twice-a-day football practices or a fever alone could have caused twice normal, enough protein leakage to turn the dipstick a deeper shade of green, 3+ green. But this would go away after a day of no strenuous exercise or when the temperature came down.

  But a small amount of protein doesn’t make your pee look like a freshly poured beer.

  Still, even a persistently deep green 4+ dipstick, suggesting up to 2,000 milligrams of urine protein, could be nothing in a kid. It could be postural proteinuria, an exaggeration of the kidneys’ normal tendency to let more protein slip through when the body is upright, which accounts for the majority of high urine protein on repeated dipstick tests in children. The first pee of the day, after lying asleep all night, would have normal protein. A full day of urine might have normal protein too. Nothing he wouldn’t grow out of on his own.

  But for every ten kids with protein repeatedly found in their urine, maybe one of them would have a zebra. Zebras with exotic, usually multisyllabic names. Minimal change disease. Focal segmental glomerulosclerosis. Still others joined the herd if you consider those caused by protein that sneaks past my imagined factory workers along the tubule conveyor belt. Cystinosis. Tubulointerstitial nephritis. Still others if you think about those that cause blood to leak into the urine too—sometimes too little for the human eye to see. IgA nephropathy. Alport syndrome. It was the one, the possibility of a zebra that obligated Gorman to investigate. A horse could not be assumed.

  “To start we’ll need to collect your urine for twenty-four hours,” Gorman told Robert.

  The protein was high in Robert’s pee when he was still rubbing the sleep out of his eyes. The protein in his pee was high at noontime and nighttime. There were more than 3,000 milligrams in Robert’s total pee for the day.

  It was definitely something. Exactly which something it was could only be determined by looking at a small sample of his kidney under the microscope. Robert would need a kidney biopsy.

  For centuries the only time kidney tissue was directly examined was at autopsy. Gabriel Valentin’s invention of the first crude microscope in 1837 allowed for descriptions of the kidney to include histology, features not visible to the naked eye. But the idea of obtaining tissue other than blood during life in the form of a biopsy was not described in medical literature until 1895, and then it was only within the context of skin diseases. The technique of taking samples of internal organs was honed with the liver biopsy, and it wasn’t until the 1940s—when it was noticed that their attempts to biopsy the liver actually retrieved kidney tissue—that physicians began to wonder if the kidney could be deliberately biopsied using a similar technique. Swedish physician Nils Alwall attempted the first needle kidney biopsy in 1944, drawing upon the experience of Danish physicians Poul Iversen and Claus Brun, who pioneered the needle liver biopsy and were the first to publish on the technique of kidney biopsy in 1951. Alwall injected a special dye into the vein of the patient sitting upright and took an X-ray to give them a sense of where to insert their needle. This technique successfully retrieved enough kidney tissue to establish a diagnosis only about 40 percent of the time, which was not much better than an educated guess.

  A portion of some of the poor success of these early biopsies was attributable to the needle itself, which aspirated or essentially sucked out the kidney cells, thus disrupting how parts were situated before biopsy. Robert Kark is credited with pushing the field forward in 1954 by repositioning the patient on his stomach and using a needle that produced longer, more intact samples. From there technology and technique advanced to our current use of automated biopsy needles and real-time ultrasound images, making percutaneous kidney biopsy safe and central to diagnosis of kidney disease.

  But try to convince someone to agree to a kidney biopsy and watch eyes widen, brows furrow, forehead wrinkle, lips purse, and head cock to the side.

  “It sounds worse than it is,” I attempt to reassure them. “I wouldn’t bring it up if I didn’t think it would give us information that could change how I take care of you.”

  I go on to describe the procedure at our hospital in detail, hoping the more information I give them, the more
the places in their mind that fear had filled with the stuff of nightmares might be replaced with the much less terrifying reality. I try to reach every possible nightmare scenario. Since it is hard to predict which fears each person has, and new fears seem to crop up all the time, I say everything to everyone.

  I tell them that bleeding and infection are the biggest risks of the procedure and how we take special care to prevent them. Bleeding is more likely to happen if we don’t go in the right place, so we position the person so that the kidney is easiest to get to. I tell them they’ll lie facedown with a roll under the stomach so that the back will be flat and the lower part of the kidney comes down from under the ribs. And the radiologist will use the ultrasound—like what we use to look at the baby in a pregnant woman—to show us the kidney the entire time. It is rare that anyone bleeds so badly that we need to do anything about it or even give a blood transfusion. To prevent infection, we make sure there is no sign that the kidney is infected and that there is no skin infection where we plan to insert the needle. We clean the skin several times and lay sterile sheets around the area.

  To reassure people that the pain will not be unbearable, I let them know we will numb the skin with lidocaine. To do that involves a tiny needle, so we will have to poke, and the lidocaine burns a bit. That lasts a few seconds. Then we will numb from the skin to the kidney with a very thin, long needle. We inject plenty of lidocaine as we go in. The kidney itself doesn’t have nerves inside it, so they won’t feel the biopsy needle inside the kidney. They will feel us pushing—we can’t take that away—but we stop and give more lidocaine if there is even a hint of sharp pain.