Hundreds of Interlaced Fingers

by Vanessa Grubbs, M. D.

  I heard him say that if I only did it because I felt like it obligated him to say thank you every year, then I shouldn’t have done it. Because he never asked me to. I heard him say this like he had been holding the words back for six years.

  15

  Ready or Not

  Robert’s transformation from choosing death over dialysis to choosing dialysis over death when death was imminent was not unusual. I have learned that this is the modus operandi of my patients with worsening chronic kidney disease much more often than not. Everybody thinks that somehow they will be the exception to the outcome the doctors are promising. That somehow it will go differently for them.

  I believe we all do this in some form or fashion. The teenager who believes he can try meth one time and his life won’t fall apart as did the lives of everyone else who went down that path. The man who believes he will beat the pancreatic cancer he was just diagnosed with when everyone else who had it before him died within a couple of years.

  I’ve done it too. I remember watching Greg Behrendt on Oprah and then the movie version of his book He’s Just Not That Into You with great interest. As a woman, the message struck a chord in me because I had made many, if not most, if not all the mistakes Behrendt points out that most women tend to make in search of “the one.” I had been guilty of reading way too much into any little thing to convince myself I was on the verge of something really beautiful from boyfriend #2 through husband #1, when truth be told, they simply were not that into me. I was not the exception to the rule that unnecessarily complicated and ill-defined relationships never turn into something beautiful. I was the rule.

  I see the same misguided exception thinking in my encounters with patients I am encouraging to begin preparing for the inevitable, impending need to start dialysis. It avoids ER trips, hospital stays, avoidable procedures. All too often these conversations end with their rejecting the notion out of hand. Most often their rationale for doing so is a firm belief that [insert higher power’s name here] will prove me wrong. They find meaning in imagined things—My legs seem less swollen today, so maybe that is a sign my kidneys will get better. They downplay the symptoms they are having—I’m not that nauseous. They hope and pray He will not allow them to be just like every other patient in the exact same situation. That they are somehow different from the rest. That He has a plan for them that will make them the exception, when I want to tell them the unfortunate truth that “He’s just not that into you. You are the rule.” But what I actually say is “I wish it could be different” or “I know this is hard” because this is the truth too.

  I saw Talia Afuta in our pre-dialysis clinic for patients with advanced chronic kidney disease. She was nearly a year from her fiftieth birthday, but her brown Samoan skin was smooth like her hair, which was coiffed just so into a low pompadour slicked into place with gel. I walked into the clinic exam room to find her face clenched like she was silently counting down the seconds until she would get up and leave. I apologized for keeping her waiting so long.

  She felt fine, she said. No problems.

  I was glad to hear she felt well. But by the look of Ms. Afuta’s blood test results, I was skeptical that she felt as well as she claimed she did. Either she had just become used to feeling bad or she didn’t want to own up to how bad she did feel.

  It ain’t never good for one’s hemoglobin (anemia test) to be the same as one’s kidney function test. Usually people with a hemoglobin of 7 (normal in a person without kidney disease is closer to 13) feel tired or short of breath or have chest pain when exerting themselves, but she said she did not. She was a large person. Usually when a large person’s kidney filtering rate drops to less than 11/2 teaspoons (7 milliliters) per minute like hers had, they felt nauseated, sometimes vomited, had a metallic taste in their mouth, and felt exhausted. A smaller-framed person might still feel well at this level of kidney function because smaller bodies can get by with less kidney. There is less body to remove wastes from.

  But maybe this large-framed “not Black” woman’s kidney function was closer to the race-adjusted estimate of almost 2 teaspoons (9 milliliters) per minute and she really didn’t have any symptoms yet. She only admitted to maybe a slight metallic taste—but that was caused by the pills doctors told her to take, she said. She was sure of it. Doughy flesh spilled over her feet without a hint of an ankle—but that was only because she was on her feet a lot, she said.

  I explained her lab results. Gave my advice to prepare for dialysis, which was long overdue.

  “I told my primary care doctor and the other doctor here—I’ll tell you when I am ready,” she said, averting her eyes.

  I took in a deep breath and exhaled slowly. Here we go again, I thought. Yet another patient with advanced chronic kidney disease refusing to do what was in her best interest. Yet another patient refusing to take action to prevent a bad situation from getting worse. As if a miracle could still happen.

  Had Ms. Afuta been facing end-stage kidney disease just sixty years ago, before dialysis existed, she would be dead within a few months at best. The miracle was dialysis because She ain’t so easy to replace. A miracle that was centuries in the making.

  It wasn’t until the sixteenth century that scientists began to notice that when urine could not pass, as in people with stones blocking the urinary system, the blood became a fluid more like urine. Over the next couple hundred years, they realized that the urine contained wastes that, if retained in the blood, would lead to the sickness and eventual death of the person with kidney failure. It wasn’t until the eighteenth century that they noted a “soapy” substance in the blood that they called “urée” and thought was the waste product responsible for what they called “uremia”—a condition that followed kidney failure in which the chemicals in the body were out of balance. It was another fifty years before they realized that, even though large amounts of this substance called “urea” were in the blood of those with kidney failure which increased progressively until death, injecting it into the blood of animals produced no toxicity. It just made them pee more.

  In the 1830s and 1840s, French scientist René Dutrochet discovered the natural movement of water from areas of lower concentration of substances to areas of higher concentrations—while membranes prevented the passage of the substances. He called this osmosis. This work earned him the title of intellectual grandfather of dialysis, as it marked the beginning of the thinking that wastes might be removed from the blood by this process. It was Scottish chemist Thomas Graham who is credited as the father of clinical dialysis because in the 1850s and 1860s he took Dutrochet’s work further by describing the separation of substances across membranes, renaming it dialysis, and observing that urea could be dialyzed across a somewhat porous membrane. This set the stage for future scientists to consider dialysis specifically for the treatment of uremia.

  Still, it took several more decades of sorting out how to make membranes and how to keep the blood from clotting once it was outside the body. It wasn’t until World War II that Willem Kolff—the father of dialysis—developed the first artificial kidney in the Netherlands in 1944. It was a huge wooden rotating drum with six feet of dialysis tubing wrapped around it that sat in a tub. Wooden because metal was taken over for the Nazi war effort and rotating so that blood could flow through the tubing. But getting steady access to the patient’s blood meant surgeons had to cut down from the skin to the pulsating radial artery in the wrist—not something that could be done over and over again for weeks or months on end. So dialysis was only feasible for patients with reversible kidney failure with the patient just needing a few days of support while their kidneys recovered from a temporary damage.

  But in 1960, Belding Scribner and Wayne Quinton in Seattle had a breakthrough that led the way to making long-term hemodialysis treatment for patients with irreversible kidney failure possible by developing the first working shunt. Made out of the new at the time nonstick material called Teflon, this first arteriovenous connection wa
s a tube sewn into an artery and another into a vein connected in a loop by another piece of tube so that it lay on the skin between dialysis treatments. However, it lasted weeks at most. It wasn’t until 1966 that James Cimino developed the technique still used today for the first surgically created arteriovenous fistula, making it the first hemodialysis access that could last for years.

  In the meantime, other scientists were trying to avoid the blood altogether by developing a means of doing dialysis using the body’s own membranes. While the intestines, the bladder, the space between the lungs and the skin, and even the spinal fluid were tried, the peritoneal membrane lining the abdominal organs proved to be the best. Jacob Fine led the most important work in peritoneal dialysis at the department of surgery of the Beth Israel Hospital in Boston. The first patient to recover from reversible kidney failure using peritoneal dialysis was in 1945. Their original system instilled fluid similar to plasma, the liquid part of blood, into the abdominal cavity between peritoneum and skin with one tube, while the fluid drained from another—continuously for four days. It took another four years to figure out how to do it with just one tube being poked through a patient’s skin.

  We’ve come a long way from these first efforts of hemodialysis and peritoneal dialysis, even though to this day we don’t fully understand the exact nature and scope of uremia. Nevertheless, this work made the kidney the first organ for which complete mechanical replacement was possible. It took about four centuries.

  Yes, dialysis was the miracle.

  No doubt Ms. Afuta had a different kind of miracle in mind, but dialysis was the only one that was coming. Without it her sixteen-year-old baby girl would soon be motherless. She seemed to be looking at dialysis as if it was the end of her life, when in truth dialysis would just mean her life would be different. No, it would not be perfect. No, it would not take away all the issues that come with a vital organ dying. Yes, it would take time and have its frustrations to deal with. But the time in between could be filled with life. Family. Friends. Exercise. Work. Play. Travel. Joy. Love. With dialysis she could expect to live years, even a decade or two. With dialysis she could expect to live until a kidney transplant was available. It would take months to arrange if she had a living donor, years if she didn’t. Without dialysis she didn’t have months, much less years. There was no escaping dialysis. If she wanted to survive. If she wanted life.

  I wondered if there was something in particular she was afraid that dialysis would do to her. I have been surprised to learn some of the misconceptions patients have about dialysis. The misconceptions are the fears, and the fears can be paralyzing. They prevent the patient from taking the well-advised steps toward preparing for dialysis. Paralysis creates emergencies.

  “They said dialysis ‘cleans the blood.’ I think dialysis burns the blood to clean it” and “They said your blood goes into the machine to take out extra water and toxins and then brings it back to your body. I am afraid I will die while all my blood is taken out of my body” are two of the more extreme ones I’ve heard.

  So I’ve learned to give more information to preemptively allay some fears. “Dialysis removes wastes and extra fluid from the blood by passing it through a filter. The filter is an artificial kidney,” I’ll say. “No more than two cups of your blood is outside of your body at a time.”

  Since I can’t be sure that I’ve reached the person in front of me, I add, “Sometimes people think things about dialysis that frighten them but simply aren’t true. If you tell me what frightens you about dialysis, maybe I can help put your mind at ease.”

  Ms. Afuta said she understood what dialysis was and had no questions about it. She knew she couldn’t escape dialysis and live. She could even articulate that waiting would mean the emergency room and rushing to things that could be avoided with controlled preparation. Yet she could not reconcile these knowns with an overriding inability to voice acceptance of something she wanted no part of.

  I tried to see the situation from her perspective. I acknowledged how hard it must be to come here and listen to bad news followed by more bad news from a person she didn’t know from Eve.

  “I wish I had known you for the last year or two, so we could have had time to get to know each other, so you could know that I am telling you what is right for you,” I said. But what I really wished was that she didn’t have to be in that situation at all. At least not so soon. That she had been screened for kidney disease early on when she was just “at risk” with a history of kidney disease or diabetes or high blood pressure in her family. Then, simple blood and urine tests once a year would have been all it took to find out if a hint of kidney damage was at hand. Then our efforts to slow things down would have been more like sitting on a hill with a beach ball against our back, our task to keep it from rolling down. Instead, we were left with a boulder, pressing against our back, gaining weight and speed as it forced us down the hill despite heels dug in.

  Her brown eyes looked into mine as if maybe she could trust me. Soon.

  Soon hadn’t arrived by the time I saw her again three weeks later. Still she said she felt fine, that she wasn’t peeing less or swelling more, though I could hear the crackling sounds of fluid beginning to collect in her left lung. But still she wasn’t ready. Maybe next visit, she said. I sighed, disappointed. It’s hard to watch someone drowning, especially when you’ve extended a life buoy. I told her what symptoms to watch for that would mean she should go to the ER before I saw her again.

  Another three weeks later, on my office computer screen, I saw her name on the schedule for clinic that day and wondered how she had been doing since the last time I saw her. Though I hoped her kidney function was stable and that she was still feeling relatively OK, I hoped even more that she would be willing to allow me to make the arrangements to get her started on dialysis without having to be admitted to the hospital. Didn’t matter to me if I was preparing her for peritoneal dialysis or hemodialysis. The quality of dialysis and the life expectancy of peritoneal dialysis are the same as they are with hemodialysis. It boils down to personal preference and a few medical considerations, such as morbid obesity or prior surgeries on the belly that make peritoneal dialysis ineffective. Whether the person preferred to be at home doing their dialysis either themselves or with the help of a caregiver as it best fit into their schedule or would rather come to a nurse- and technician-staffed center at a scheduled time for hemodialysis.

  In a 2012 study, US nephrologists were asked which modality or way of doing dialysis they would choose if they themselves were faced with kidney failure and a kidney transplant was five years away. Only 7 percent said they would choose in-center hemodialysis. Yet more than 90 percent of dialysis patients in the United States receive in-center hemodialysis three times a week. This has more to do with an American expectation of being taken care of rather than taking care of one’s self, the lack of a payment structure for nurses to help those who can’t physically do their own dialysis at home, and what the nephrologist is most familiar with than anything about peritoneal dialysis itself. People balk at the fact that home dialysis must be done every day, whereas in-center hemodialysis is just three times a week. If one considers the total time required of each type of dialysis (for example, including travel to and from in-center hemodialysis), then peritoneal dialysis can actually take less time than in-center hemodialysis. But time isn’t really the issue. Most patients presented with the options choose to accept the needles and symptoms of fatigue, dizziness, and cramping that come with trying to do in just three or four hours (as with in-center hemodialysis) the work that peritoneal dialysis does all day—without needles or these symptoms—in exchange for only having to think about dialysis three days a week.

  In other countries, 25 percent to more than 70 percent of patients with end-stage kidney disease do peritoneal dialysis because hemodialysis is too expensive. In America, peritoneal dialysis costs about $67,000 per person per year and hemodialysis is about $85,000 per person per year. Here we se
em to assume cheaper is worse when really it just means there is no staff or building that must be paid for.

  Any dialysis method Ms. Afuta had chosen would have been fine by me. Already it was too late to avoid a hemodialysis catheter, even if she had surgery to create a fistula the next day. The reality was that it would take weeks to get her an appointment to see the surgeon and have the study of her blood vessels to determine which were large enough to make a fistula, more weeks to actually have the surgery, and at least six more weeks before the fistula would be ready to use. We may not have been able to avoid the hemodialysis catheter even if she wanted to do peritoneal dialysis, as that required an appointment with the general surgeon or interventional radiologist and two weeks to heal before being ready to use.

  On my way to clinic, I stopped by the hemodialysis unit to write an order in one of my patient’s charts and was surprised to see talia afuta in block letters on the spine of a neighboring chart. Her name was hand-written—the clerk had yet to find the time to print it out from the computer onto paper color-coded to signify who her nephrologist was. She had been assigned to the Tuesday-Thursday-Saturday third shift. She was due to come in for dialysis later that day.

  After clinic I stopped back by the dialysis unit to find out how she went from “You should get ready for dialysis” in the clinic to “If you don’t start dialysis now you will be dead within hours” in the ER.

  She sat in the recliner with the leg rest extended. Her skin was ashen. She appeared to have aged a lot since I saw her not even a month prior. She was watching a movie on a DVD player. She looked up as I approached, and the look on her face changed from contentment to embarrassment, like she knew a well-deserved I told you so was coming her way. Instead, I asked her how she was doing and what happened.