“I’ve been drinking it every day for the last two months,” he went on, sitting up straight with his shoulders back. He was pleased with himself.
“I want you to stop drinking it,” I said sternly. His face changed with a quizzical arch of one eyebrow.
“You want me to stop drinking it?” he asked. I nodded and watched his frame deflate like a scolded little boy who knew he had been bad.
To ease his guilt, I explained that what he had done was not unusual. That most people assume natural products could only do good. That because dietary supplements are considered foods and not drugs, the companies making them are not required to test their products for safety in anybody, much less people with chronic kidney disease. They are not required to prove the benefits they claim the products have are true. They don’t even have to make sure that each batch contains the same amount of an active ingredient.
“So, yes, please stop taking it,” I said again. “And I want to check your kidney function again in one week.” I hoped we weren’t too late.
A week later his kidney function test was back to 6 teaspoons. I exhaled in relief.
I called Mr. Holly with the good news.
“So I shouldn’t drink it anymore, huh, Doctor?” he asked, and I exhaled with something more like surrender before repeating myself again.
No one wants to hear that there is no quick fix for chronic kidney disease. What’s best is to avoid it altogether. Don’t gain too much weight, don’t drink too much, don’t eat too much salt, don’t take too many NSAIDs, don’t smoke or use recreational drugs at all, and avoid the majority of its causes including diabetes, high blood pressure, clogging of the kidneys’ blood vessels, and HIV.
Some of the causes of chronic kidney disease are a bit harder or impossible to avoid, like cancer, kidney stones, or a large prostate blocking urine’s path out of the body. Or being born with abnormal anatomy forcing urine the wrong way. Or developing a disease that damages the kidneys’ filters like lupus or FSGS. Or inheriting polycystic kidney disease or sickle cell disease.
Once a person has chronic kidney disease, we try to slow down the rate at which the function declines by controlling or taking away the things that are hurting their kidneys. Control the blood pressure if it’s high. Control the blood sugar if there is diabetes. Lower the protein in the urine with medications if there’s too much in it. We’ve got lots of pills for all of that—three and four and sometimes five different kinds of pills for one body to take, once or twice a day, every day.
If we’re lucky, I get to tell a patient that their kidney function is stable when they return for their next clinic visit, but there is potential for confusion in the word stable. A reminder came in the form of an e-mail.
“You said my mother’s kidney function was stable and she didn’t need to come back for two months, but someone called the other day and said her kidneys were really bad and that she’d need a kidney transplant,” the e-mail accused. “So which is it?” it went on to demand.
“Both,” I replied.
I know many people who became doctors because they wanted to “help people” and, truth be told, because they are fascinated by all the weird things that can go wrong with the human body. The teratoma, a tumor with hair, teeth, and sometimes even limbs growing in it, comes to mind. I don’t know anyone who went into medicine to give bad news and upset people on a daily basis.
Yet this is where many of us end up—making people cry for a living. It kind of wears on the spirit after a while, which is why we tend to choose words that are technically the truth, hopeful even, but perhaps not very clear. Words like stable. Stable is a word doctors use in an attempt to reassure the patient that although this is an unfortunate situation, at least it hasn’t gotten worse since the last time we looked at it. But at the same time it seems some patients interpret stable to mean things aren’t too bad after all. Things are OK. Good even.
As chronic kidney disease worsens over time, we try to replace the functions kidneys stop being able to do. When there is anemia because the kidneys can’t make enough of the hormone that stimulates the bone marrow to make blood, we can give a man-made version in shot form. When the kidneys can’t maintain normal phosphorus levels in the blood, we’ve got pills to absorb it in food so it doesn’t get absorbed into the bloodstream. When a patient can’t buffer all the acid in the food we eat, we’ve got still more pills to balance it out. When they can’t maintain normal potassium levels in the blood, we’ve got a powdered drink to help them poop it out.
But despite our best efforts, at some point, we can’t keep up with the body’s needs. The horses continue to trample until it gets to the point where She has suffered in silence too long and simply won’t take it, can’t take it, anymore. She gets sicker and sicker until, eventually, the person is left with end-stage kidney disease.
The hope is that our efforts will make eventually as far away as possible. Because once eventually comes, all that is left to do is to try to replace the kidneys with a transplant or dialysis, because we can’t live without Her.
Part IV
You’re Gonna Miss Her When She’s Gone
14
Expectations
He just needs a kidney and he’s good, right? I remember my friend Melva’s words. Like Melva—and like most people—I thought transplant would be the cure for Robert’s illness. I thought all our real problems would be over once Robert had a transplant. Transplant was supposed to be the beginning of our happily ever after. Our panacea.
But life and fellowship taught me that sadly, unfortunately, unfairly, with kidney failure there is no happily ever after. There is no cure. No panacea. I learned to see transplant for what it is—a treatment for kidney failure. And like any other treatment, it has its downsides. Bodies reject kidneys. Transplanted kidneys fail. The time in between is spent taking a handful of pills twice a day and silently praying that the disease that caused the original kidneys to fail in the first place doesn’t come back.
One particular scare came after my nephrology fellowship, but it certainly wasn’t the first. We were six years out from transplant, what Robert had come to call his re-birthday, when routine labs showed his creatinine had bumped. The blood test for kidney function was 2.5, when it had been less than 2 just a few months prior. Normal is closer to 1, but my kidney was considered small for Robert, so his kidney function had never reached normal. The bigger the body, the higher the muscle mass. More muscles produce more creatinine, so he needed more kidney to pee out the creatinine. A rising creatinine in the blood meant dropping kidney function.
Robert was dismayed. He had been doing everything he was supposed to do. How could this be happening so soon when we were hoping for forever?
There was little protein in the urine, so it was unlikely that FSGS was recurring in the new kidney. An ultrasound showed there was no evidence of a blockage like he had in that first week after transplant. Too much time had passed to worry about acute rejection—that usually happens within the first six months—but chronic rejection was still a possibility. Robert needed a biopsy.
Biopsy of the transplanted kidney is simple compared to biopsy of the kidney a person is born with. Located just beneath the muscles in the lower right belly, the transplanted kidney is much easier to get to with a biopsy needle, and it’s much easier to apply pressure to prevent significant bleeding. To Robert, though, it was still a controlled stab. He grimaced his way through it and had to be reminded to breathe.
While he lay in the recovery room with a sandbag positioned on top of the kidney transplant, my colleagues invited me to join the team in the pathology department to look at the biopsy sample under the microscope. I was hoping they would—it isn’t every day that a person gets to see their own kidney.
Looking through the microscope, I was transported back to the pathologist’s lecture years earlier. I grinned. She was a thing of beauty. It was all I could do to not pop my collar. There was no sign of FSGS and no sign of rejection. I
couldn’t wait to give Robert the good news and almost skipped the whole way to recovery.
With obstruction, rejection, and disease recurrence off the table, the only thing left on the list of possibilities was high blood calcium, which was found on the routine lab tests. High calcium could cause blood vessels in the kidney to narrow, thus restricting blood flow to the kidney. To bring down Robert’s calcium level required removing the source—overfunctioning parathyroid glands.
The parathyroid glands look like four slivers of rice nestled on the back of the thyroid gland, just above the breastbone. Because they work with the kidneys to maintain normal levels of calcium in the body, it is the norm for patients with advanced chronic kidney disease to develop what we call secondary hyperthyroidism. Here the parathyroid glands work harder, stealing calcium from the bones, as they are trying to keep up appearances of normal blood calcium in the face of failing kidneys—like Spanx fighting to maintain an hourglass figure against an expanding waistline. The bones weaken over time and are more prone to fracture—unless the medications that try to replace the kidneys’ role are taken diligently.
But some patients who have had end-stage kidney disease for many years go on to develop tertiary hyperthyroidism, in which one or more of the parathyroid glands have enlarged and overfunction to the point that calcium is abnormally high, in spite of medications—like a warped Stephen King version of Spanx that get thicker and thicker and can’t be pulled off. At least two of Robert’s parathyroid glands had made this transformation and could no longer be managed with medications. They needed to be removed as soon as possible.
Endocrine surgeon Qing Yu entered the clinic exam room with a relaxed purpose. There was no rushing, but there was no time to waste either. “I spoke with your nephrologist and reviewed your records,” he said to Robert between his thin-lipped hello and sitting down. “I agree you need to have your parathyroid glands removed, a parathyroidectomy.”
Though facing yet another surgery, Robert was not afraid. It was reassuring to know that Yu specialized in parathyroid surgery, but what abated his fear even more was the knowledge that the kidney was healthy. That what was wrong could be fixed. A surgery he could handle. But a failing kidney? He wasn’t so sure he could handle that. Robert stared intently into Yu’s round face as he explained what the surgery would entail. He liked that Yu gave him straight answers even when he didn’t know.
“I will remove at least two of your glands. I may need to take more. I won’t know until I get in there and see what’s going on.” He examined Robert’s neck and showed him where he would need to cut. He warned him that if the glands were very low, he might have to cut his breastbone in order to get to them.
Truthfully, it was the cutting and the scar that would remain that worried Robert most. He already felt Frankensteinian with his fistula arm. He worried that he would have to walk around trying to hide his arm and his neck to avert the stares and questions.
“A plastic surgeon will be there to close the incision,” said Yu, and Robert felt himself relax.
The surgery was scheduled within a few weeks. I expected it to last about four hours, so when the sixth hour came but Yu had not appeared, my anxiety surged. I had articles from medical journals with me to help pass the time, but all my eyes would focus on was the second hand ticking around the clock on the wall in the surgery waiting room.
Finally Yu emerged.
Robert’s anatomy was complicated. Though tests before surgery suggested only two of his parathyroid glands were overfunctioning, once Yu exposed them, all looked enlarged. So a surgery that set out to remove two glands ended up removing three and a half. Yu hoped to leave just enough to keep Robert’s calcium at acceptable levels. It didn’t help matters that Robert’s glands were unusually low, tucked underneath the breastbone. So low, Yu thought for a moment that he would need to saw his breastbone in half to get to them, but a wider cut and an aggressive pinning back of Robert’s shoulders averted that threat.
Robert awoke to very sore shoulders and a five-inch-wide scar on his neck that would eventually fade to be barely noticeable, but also to the news that the surgery was successful. He was discharged the next day with a normal blood calcium level and a creatinine drifting back to where it was before.
“Where are you going?” I asked, watching him grimace as he began to pull himself up from the couch at home.
“I’m going to get something to drink,” he grunted.
“You know . . . I can do that for you. Sit back,” I said as I rose and headed to the kitchen.
“Oh,” he said, his face scrunching either because of pain or because it hadn’t occurred to him that I wanted to take care of him, but he did sit back. It was hard for Robert to let me dote on him. He wasn’t used to people doing anything for him and had learned early in life not to expect it.
“You’re a self-starter,” his parents had said to him when he was a boy. “Your brother needs extra help,” they would say, as they proceeded to rescue his two-years-older brother Eddie from predicament after predicament. Little Robbie was expected to fend for himself. Eddie was presented a new car when he turned sixteen. Robert bought his first car on his own after college. Eddie’s four years at community college, then five more at Morehouse, were parent-financed. Robert took loans to cover what his football scholarship would not. As a result, he prided himself on not needing anyone, on not being indebted to anyone.
A failing body took away that pride. Every need that kidney failure created put another crack in the mirror of how he saw himself. The reflection had become so distorted, it was hard to remember what he once looked like. Who he used to be. He had needed to live with his parents in order to feel safe. He had needed a dialysis technician to stick his fistula just right in order to have just an OK day. He needed dialysis or a kidney transplant in order to live.
Some needs were easier to accept. Parents are expected to help their children. Dialysis technicians are paid to do a job. But nobody has to give away her kidney. It is a gift that cannot be matched—which was why Robert would have preferred a deceased donor kidney. A dead man collects no debts. My kidney made Robert whole again, gave him hope that he would get back to who he once was and on to the person he believed he was supposed to be—but shards of mirror fell to the floor. Robert felt indebted.
And every April 14 since 2005 was a reminder of it.
I had two points of reference for what our transplant anniversary could look like. The first was through Amy Markowitz, a scientific editor with a law degree whom I had been introduced to when I was just planning to donate my kidney. She described how years prior she had donated to her best friend. And how every year since then, her best friend had spent the day expressing her gratitude in words, time, and togetherness. Gratitude that because of what Amy did, she never had to go on dialysis. That because of what Amy did, she would have a much better shot of watching her two young children grow up.
The second was during my nephrology fellowship. The recipient lay in a gurney as I helped prepare him for a kidney biopsy. It was the third or fourth biopsy he would have in as many years since his wife gave him one of her kidneys. Another rejection scare.
He grinned and shrugged his shoulders, Guilty as charged, like an irresponsible teenager as she stood at his side lamenting the fact that she didn’t know what else she could do to get him to take his antirejection medications consistently. I had shared that I donated my kidney around the same time she did.
“Sorry, I don’t have to remind my husband to take his medications.” I shrugged, then added, “I did my part in giving him a kidney.”
She looked at me as if it hadn’t occurred to her that she had done her part too. That remembering to take the medications to keep her gift to him alive was the least he could do in return. She turned to look at him as if to say See, her husband remembers to take his medicine. He looked back at her with the same stupid grin on his face. He was literally pissing away her kidney, as if she had another to give. I co
uldn’t think of a more disrespectful disregard for what she had done.
As Robert and I approached our seventh transplant anniversary, Robert’s shrug in response to my question of how we would celebrate it felt painfully close to the man pissing away his gift. I took his shrug to mean he hadn’t given any thought as to what we would do, as if it was no big deal to him. He intended his shrug to question why I was asking him for the plan, as if it was his responsibility alone. We both reacted. And argued. About how we would celebrate the anniversary of what was arguably the most pivotal day of both our lives.
Truth is, neither of us can remember what was actually said that day. Only how we interpreted the words. Only how they made us feel.
He heard me say that the transplant anniversary was all about me, when he felt it was supposed to be about us and what we had been through together. He heard me telling him that he had to do something for me like I wanted it done, when he felt taking care of the gift was a daily demonstration of his gratitude. Life had taught him that only actions spoke the truth. Words were just background noise.
I heard him calling me selfish for expecting a simple thank-you once a year, when I felt it was the least he should want to do. Life had taught me people do things for many reasons—because they have to, because they are expected to, because it’s good for them to. It was the words that bubbled up directly from your heart and got stuck in your throat that held the real truth.
Hundreds of Interlaced Fingers Page 13