Seeing his own name in print gave Robert an extra glimmer of hope that he too could have this promise fulfilled. This could be me, he thought. But he had to be careful. Could this be me? He couldn’t hope too much. Hoping too much was dangerous. Hoping too much made getting through the day-to-day too hard. The focus was getting through this day, this moment. And because his “moment” as a person on dialysis could last another five, ten, fifteen, twenty years, to treat it like it was a short-term thing meant to risk survival—of body and spirit.
People who didn’t learn this lesson could not survive, Robert believed. The spirit would go first. Then the body. Like it did with Monsor.
“Monsor sat in the dialysis chair next to me,” Robert began the story. “I remember him saying over and over again, ‘I ain’t gon’ be here long with y’all. I ain’t gon’ be here long.’ He was sure a transplant would happen for him quickly.”
He went on wistfully, looking somewhere over my head to the right, smiling in the memory. “Monsor was tall and muscular in the beginning. You wouldn’t know he was on dialysis. His dress, his attitude, the way he carried himself. He would have his dialysis run and be on about his business. . . . He was older, dark-skinned, and wore his hair pressed straight so that it came down almost to his shoulders. He always wore jewelry. Bracelets. He had a hoop ring in his nose and an earring that were connected on the left side by a gold chain studded with diamonds. He always wore silk shirts and walked into the dialysis unit bare-chested with his shirts open. And he wore these round glasses with a black frame across the top that flared out like horn-rimmed glasses.”
“Hold on,” I interrupted. “Was Monsor a pimp?”
“Yeah, he was,” he said boyishly, as if surprised his description gave it away. “But pimpin’ wasn’t paying enough so he had a nine-to-five too. About three years into it and a transplant didn’t happen, he was like ‘Fuck it,’ and became difficult to be around. Angry. He didn’t eat right. He lost his job and a lot of weight, but he was too proud to apply for assistance. His dress changed. He went from being a clotheshorse to Dumpster diving for stuff to put on. He stopped getting his hair done. The stereotypical pimp fried, dyed, and laid to the side hair became an unkempt Afro. Eventually they found him dead on the street.” His smile faded as he looked down at his hands.
“Did that make you sad?” I asked.
He instinctively shook his head. “He wasn’t the first person who died,” he said with a shrug, but there was the twitching at his right temple that I had learned to expect whenever feelings came up for Robert.
Robert was much better at expressing his feelings in writing. Over the years he often had flowers delivered to my office or home just because he was thinking of me and sent me e-mail love letters and random texts with love quotes. In person, however, feelings were things that he braced himself for until they passed, like earthquakes, hoping there wouldn’t be too much collateral damage left in their wake. He had the same approach with my feelings. He usually shifted his eyes left and right to avoid watching tears stream from my eyes. Sometimes he would just look at me blankly as if I was a stranger and he wanted to inform me that water was coming out of my eyes, like he would let someone know they had spinach in their teeth. At best he offered what felt like a bear paw heavily patting my knee: There, there, it’s gonna be OK. My Robert is romantic. From a distance.
For me the story of The Other Robert Phillips was a sign. A clear, indisputable sign that My Robert would get a transplant and that it would last decades upon decades too. No matter that The Other Robert Phillips was White and shared DNA with his donor and had a completely different cause of kidney failure than did My Robert. It was enough for me to hold on to.
I went with My Robert to his kidney transplant evaluation appointment in 2004. It was a beautiful late November day in San Francisco. The fog had not yet rolled in over the Golden Gate Bridge. Robert and I tingled with anticipation. He had been told that after five years of being on the kidney transplant waiting list, he was finally near the top and that the visit was a mere formality to make sure he was still healthy enough to get a kidney transplant and still wanted one. And just like on TV and in the movies where people who get CPR simply get up and walk out of the hospital, they had Robert believing he would be assigned a pager that would beep us out of sugarplum dreams in just a few days. And despite the MD behind my name, I actually imagined him going from clinic to hospital gown to get his new kidney the next morning.
Instead, we sat in a clinic exam room listening to a series of people whose job it seemed was to talk Robert out of even wanting a transplant. They filed in and out, one after the other.
“Even after your insurance pays,” said the financial counselor, tap-tap-tapping on the calculator, “you will still have to pay $215 every month for the medications. Can you afford that?”
“For you,” said the nurse, glancing at the chart, “it will be another year. We just don’t get that many”—glance at the chart again—“O-type organs.”
“African Americans reject kidney transplants more often. Their immune systems are just so strong,” said the transplant nephrologist, his arms and fists crossing before him in a weak muscle pose, like he was paying Robert a compliment.
Each statement was like a sobering slap to the face. Perhaps since there simply weren’t enough kidneys for everyone in need of one, it was the transplant team’s practice to tailor their discouraging remarks to each patient who sat in that chair. But being privy only to what was said to us, the message we took away was “The kidney transplant system doesn’t like Black people.”
National data said it wasn’t just our imagination or where we sat. I soon learned that though Blacks and Whites each made up a third of the kidney transplant waiting list at that time, Whites received every other donated kidney and Blacks received every fifth one, which meant that on average, Blacks waited nearly two years longer than Whites for a kidney transplant. As a primary care doctor at the time, not aware of the realities of nephrology, I didn’t know that two years could mean never having to be on dialysis at all. That two years could be the difference between surviving in body and spirit. Or not.
There are a number of reasons why not everyone healthy enough to receive a kidney has an equal chance of getting one. A person must be in the care of a nephrologist—one who looks at them and considers transplant as a viable option and actually makes the request for a transplant center to evaluate them. According to several large research studies, only one or two out of every ten people with significant kidney disease are aware that they have it, and would, therefore, unlikely be in a nephrologist’s care. There is no national repository of kidney function tests that generates automatic referrals for kidney transplant evaluation, and there is no one to ask a nephrologist why he or she hasn’t referred a particular patient with advanced chronic kidney disease for evaluation.
Robert had been under the care of a nephrologist for years prior to reaching end-stage kidney disease but didn’t hear about kidney transplant as an option until months after starting dialysis. Now in all fairness, few nephrologists would begin a conversation about kidney replacement options before the patient’s kidney function—their estimated glomerular filtration rate or eGFR, how fast the kidneys filter the blood—had fallen to 25 milliliters per minute, and the patient cannot be placed on the kidney transplant waiting list until kidney function reaches 20. The medical world tends to simplify the explanation of eGFR to patients as “percent function,” though 100 percent function of normal kidneys in a young person can be closer to 125 milliliters per minute, so a more accurate and easier-to-understand explanation would be that we start out with about half a cup, or 25 teaspoons, of blood flowing through our kidneys’ filters every minute. Using this analogy, nephrologists usually start talking about kidney replacement options when it has dropped to 5 teaspoons a minute, and a patient can be placed on the waiting list once his kidney function has dropped to 4 teaspoons a minute.
So maybe Ro
bert’s kidney function dropped from an eGFR of 30 to starting dialysis (an eGFR between 5 and 10) in a year—unlikely, but it could have happened and would explain why his nephrologist hadn’t mentioned anything. But Robert wasn’t referred for transplant evaluation until he had been on dialysis for a full year. Since time on the waiting list is one of the most important determinants of who gets the next deceased donor kidney that comes in, when a person’s name is added to that list can truly be the difference between life and death.
Years later, a transplant nephrologist said to me, “It’s like rearranging deck chairs on the Titantic,” suggesting that no matter how the rules for deciding who gets a kidney were changed, it wouldn’t make much of a difference. There simply weren’t enough kidneys for everyone who needed a transplant to get one. Somebody would be left out. And the ship was still going down.
It is true there aren’t enough kidneys to go around—in the United States only about 17,000 kidneys are transplanted each year though more than 100,000 people are waiting for one—But how about we unlock steerage to at least give the poor people a shot at a chair? I thought. Or, even better, a shot at getting into a life raft.
In December 2014, the Kidney Allocation System implemented a new rule that turned the key in the steerage lock: the waiting list date would be backdated to when the patient started dialysis rather than at the time of transplant evaluation. This was an important step toward minimizing the effect of human error on access to kidney transplantation.
But it didn’t go far enough.
It didn’t go far enough because most people start dialysis when their eGFR is somewhere between 5 and 10. The difference between an eGFR of 20 and 10 alone can be several years for many patients. Years that could be spent accruing time on the kidney transplant waiting list. Sometimes so many years that a patient could potentially get a preemptive transplant—a transplant without ever having to go on dialysis.
No doubt how we estimate kidney function similarly delays how soon a patient gets on the waiting list, as with a patient I wouldn’t meet until years later whom I call Book of Eli because he is Denzel Washington’s doppelgänger as he appeared in the movie The Book of Eli, minus the dark glasses and shotgun. He even had similar mannerisms. The way he held his mouth. His laugh. How he talked. In short, he was a good-looking brother with a chronic kidney problem. Book of Eli was quite muscular when we met. But over the years, as his kidney disease worsened, his muscles had begun to waste away. When we met I needed a large cuff to take his blood pressure. Five years later, a regular-size cuff would do.
Like most of my patients with chronic kidney disease, when Book of Eli came in for a clinic appointment, he wanted to know how his kidney function lab test turned out very soon after “Hi how are you?”
I scrolled down his electronic medical record to find his creatinine and eGFR. Creatinine is a breakdown product of our muscles, is produced at a fairly constant rate every day, and passes freely through the kidneys’ filters but, for the most part, is not pushed out or pulled back into the body by the kidneys’ tubules. For this reason, we use it to estimate kidney function. Getting closer to actual kidney function requires both a blood test and collecting a patient’s pee for twenty-four hours. Getting even closer to actual kidney function requires a research lab, an IV, repeated blood draws, and essentially all day—and this isn’t even the actual kidney function.
In 1999, a bunch of researchers published a study of about 1,600 adults examined in order to come up with equations to estimate kidney function. Just plug in the patient’s creatinine, age (because adults tend to lose muscle mass as we get older), and gender (because men tend to have more muscle mass than women), and voila!—an estimate of kidney function. Most laboratories can do this for us now. A rising creatinine level in the blood means the kidneys are not able to pee creatinine out as well as they used to, so the person’s estimated kidney function is lower.
But wait—if the patient is Black, the study determined that you have to multiply by 1.2 to get a more accurate estimate. This finding was attributed to Blacks in the study having higher muscle mass than Whites and, therefore, higher amounts of creatinine in their bodies. Laboratories report the eGFR, and just below it, the eGFR if Black.
Of course one of the problems with generalizations is that they aren’t always true. In medicine, in particular, they make us lazy and we often accept them without question—especially when they are in line with our underlying assumptions and beliefs. Like the belief that Black and African are inherently different from White and European at a DNA level, a belief that dates back to the days when American researchers were measuring Black-White differences in skull size to prove Black inferiority and justify slavery.
But I wonder how often health-care providers make the mental adjustment that the “race adjustment” is really a proxy for muscle mass rather than just focusing on the race of the person in front of them when they are assessing lab results. I wonder if the person in front of them were a White male bodybuilder how many would tell him the race-adjusted estimate of kidney function, or a skinny Black woman the non-race-adjusted estimate.
Then too I wonder how many health-care practitioners realize that equations derived from the original study of 1,600 people only included about 200 Blacks—and no American Samoans, no Hispanics, no Asians. These groups have very different body frames, but all are simply “not Black” in our equations. The implication, then, is that only Black people are different. This shortcut has the potential for a significant negative impact on Black patients who happen to not have a high muscle mass. Patients like Book of Eli. When the non-race-adjusted eGFR is 20 (when a person can be placed on the waiting list), the race-adjusted value is closer to 25. Just as the difference between eGFRs of 20 and 10 can be several years for many patients, so can the difference between 25 and 20. Years of accruing time on the kidney transplant waiting list when thirteen people on the waiting list die every day waiting for a kidney.
I explained this to Book of Eli and asked him to collect a twenty-four-hour urine sample and get a blood test so that we could get a more accurate measure of his kidney function. The twenty-four-hour test result was 20—the same as the “not Black” eGFR. His race-adjusted eGFR was 24. I referred him for transplant evaluation with the twenty-four-hour eGFR estimate. It was another two years before he started dialysis—with two years of time accrued on the waiting list. Two years closer to a kidney transplant. It probably would have been just a year if I waited for the race-adjusted estimate to dip to 20. Zero years if he wasn’t under the care of a nephrologist. I was glad that Book of Eli was under my care, but especially glad that I could see beyond his race.
I knew none of this when Robert and I sat alone in that clinic exam room after the last transplant team member filed out. I just knew that the man I loved needed a kidney and it felt clear to me that the kidney transplant system couldn’t or wouldn’t move fast enough to get him one.
But I had one to spare, I thought. So it was in that moment that it first occurred to me to say, “We should try to see if I can give you a kidney.”
“No, I don’t want to do that,” he said softly without pause and without looking at me. I was reminded of the last time I said something so startling that provoked a similar response.
“Let’s make a baby,” I had gushed then.
I was sitting on Robert’s thighs, my knees leaning into the sides of his belly. He was sitting up in my bed, his back against the headboard, legs stretched out beneath me. We were in that sweet spot of a relationship where the love was so new that we smiled at each other in the miracle of requited love, but not so new that we hadn’t worked through our first tiff.
Still, the words poured out of my face before I could stop them. It was my spontaneous proclamation of how big the love I felt for him was, of what was happening between us. How I wanted to tether myself to him in a way that was bigger than the two of us.
His smile gave way to brows lifted in surprise, then furrowed in
worry. There were a few twitching beats at his right temple. He looked up and to the left, blinking, the way people sometimes do when they are trying not to cry. His green eyes glistened.
“I can’t do that,” he said, just above a whisper.
It was then that I saw it. I saw the uncertainty well up in his eyes. Uncertainty that did not allow for planning for a lifetime when dialysis gave him a three-times-a-week reminder that he might not get to grow old.
But what if he did get to grow old? What if he was one of the lucky ones who survived decades on dialysis? What if he did get a kidney transplant and his body didn’t reject it, kill it, because that’s what the body’s immune system is supposed to do when something foreign comes in? He couldn’t allow himself to hope for a transplant, but part of him needed to live like it would. But to plan for another life? He wouldn’t allow himself to take it that far. That felt irresponsible.
I held his face in my hands and brought his forehead to mine. He didn’t need to say any more out loud. We exhaled deeply together as if there wasn’t room in our lungs for our short breaths in. Everything would be all right. I would believe it and hope for it in a way that he couldn’t. And there would be no more talk of babies until everything was.
In that clinic exam room, I saw the same twitch at Robert’s right temple and the uncertainty in his eyes again. It was bad enough that he had brought me into his reality and captured my heart. He could not allow me to risk my life too. If something went wrong, he wouldn’t be able to bear it. That would be too much.
And then there was the possibility of disappointment. That I might change my mind. I knew a few before me had said the same words to him—Let’s see if I can give you a kidney—but each had fallen by the wayside for whatever reason. Some offered that there was a medical condition that would make it too risky. Some just tiptoed backward into the shadows. Robert never asked why. He didn’t want to see the truth that he suspected in their eyes—that they wanted to give him a kidney in theory, but not when reality set in.
Hundreds of Interlaced Fingers Page 4