Mr. R wheeled Mr. J into the exam room 90 minutes late. Since patients often wait an hour or more to see us here in the county clinics, it was not an issue for me. But there was an air about Mr. R that let me know I was in for a special encounter. I introduced myself, first to Mr. J, the patient, then to Mr. R. Though Mr. J was in his late 50s, he looked much older. He was a large man, filling up his wheelchair. An oxygen tank piggy-backed the wheelchair, its tail a long clear plastic tubing that wrapped around Mr. J’s scruffy face and anchored below each nostril. Everything he wore was faded. His flannel shirt. His unlined cotton jacket. The bands of his gray sweatpants were cut away to make room for swollen legs and ankles spilling over his loafers. He sat hunched over in the wheelchair while Mr. R stood erect, his narrow shoulders cocked back like a rooster. He looked to be in his late 40s or so and shook my hand firmly. With a flick of his head he flipped oily brown strands of hair out of his face. He had been Mr. J’s caregiver so long, Mr. J was a dear friend to him, I would soon learn.
“I’ve had some medical training and there are a lot of doctors in my family, so you can say things straight out to me,” he offered and almost strutted to a chair after parking Mr. J in the center of the room. “I’ll understand.”
“OK,” I smiled, half surprised he didn’t sit on the doctor's stool at the desk.
“So how can I help you today,” I turned my attention to Mr. J. He shrugged, so Mr. R spoke for him, explaining Mr. J’s recent history of multiple hospital admissions and medication changes. Along the way he injected words like exacerbation and edema and diurese, instead of attack or swelling or use water pills to pee out extra fluid. Each he delivered with a pointed nod as a demonstration his medical training, I presumed.
As he talked, I scanned the notes and lab test results in Mr. J’s electronic medical record. Mr. J had a long, complicated medical history. A stroke that left him wheelchair-dependent. Chronic obstructive lung disease that left him oxygen-dependent. Deep blood vessel clots that left him blood thinner-dependent. Decades of ongoing smoking and uncontrolled diabetes and high blood pressure that led to severe blockage of the tiny arteries that fed his heart and heart failure. But as a nephrologist, I was asked to enter his life because of kidney failure. More precisely, kidney transplant failure.
Mr. J spent 5 years on hemodialysis until every surgically created access to connect him to the dialysis machine—in his left forearm, his left upper arm, his right forearm, his right upper arm, his left groin, and right groin—had clotted off one by one. The large blood vessels that ran through the center of his body were so completely clotted off, not even tiny tubing could be passed through. Hemodialysis was no longer possible, so he was given a kidney transplant. No, he hadn’t stopped chain-smoking cigarettes. No, he didn’t take his medications even close to how they were prescribed. No, he didn’t always show up for dialysis as prescribed. But, still, he had exhausted all dialysis access, and that indication alone trumped all contraindications for kidney transplant. After all, he couldn’t just be allowed to die.
And here he sat before me 8 years later, his kidney transplant now functioning at only about 15% of capacity because he continued to smoke almost constantly but only took his transplant medications sometimes. The transplant medications put the rabid dog-like immune system to sleep. Taking them only sometimes allowed it to wake just enough to slowly gnaw away at the object that is clearly not a part of its owner.
“I keep trying to get him to take the medicines like he’s supposed to,” said Mr. R, exasperated.
Mr. J snorted. “They make me sick,” he said.
I stood to examine Mr. J. With my stethoscope I reached under his jacket and shirt. I heard the fine crackling of fluid in the bases of his lungs. I lifted his sleeves to find scars of old dialysis accesses. I pressed my thumb deep into the doughy swelling at his ankles, his shins, his knees. I sighed knowingly as I sat back down to explain the situation as I saw it.
Mr. J was not a candidate for a second transplant—he hadn’t taken care of the first one and he smoked and he had bad heart failure and he had bad lung disease. Maybe some of the large central blood vessels had dissolved enough over time to allow the tubing of a dialysis catheter to pass, but to find out would require a venogram. A venogram would require contrast, a special dye to be injected into the blood stream to see the blood vessels on x-ray. The contrast would undoubtedly cause enough kidney damage that dialysis would be required. To cause kidney failure without a way to dialyze the patient was to hasten his death to within days, when death would probably not be for months, maybe even a year or two if we left him alone. Supportive care for any symptoms that kidney failure would bring was, in my opinion, the most appropriate course of action.
Mr. J only huffed by the tubing at his nostrils and smiled a crooked, close-lipped smile as if he already knew. He didn’t want any of it anyway, he said. More dialysis. Another transplant. He'd had enough of it. He was tired.
But Mr. R was having no parts of what I said.
“Just tell me, whose ass I need to kiss to get him another kidney,” said Mr. R confidently with a cocky tilt of his head that said he knew how to make things happen in this medical system. After all, he had some medical training and there were doctors in his family.
“You’re not hearing me,” I pushed back. “Fourteen people die every day waiting for a kidney. Mr. J hasn’t taken care of this one. How many other people need to die to give Mr. J here another chance?”
Mr. R retreated, his shoulders rounding. His face reddening. His eyes watering.
A month later Mr. R and Mr. J returned to the clinic. This time they saw my colleague. The transplant nephrologists and surgeons were to be the final arbiter on whether or not Mr. J was a re-transplant candidate, not us general nephrologists, he said. No matter that the transplant center was so busy, patients who we felt were good transplant candidates waited months for an appointment. An ultrasound, a type of x-ray that does not use dye, might be able to see if central blood vessels were open, he said, so he referred Mr. J to be evaluated by the vascular (blood vessel) surgeons. Yes, he agreed with me, if a new dialysis access could be established, Mr. J’s other medical problems and lack of motivation would make him a dialysis “nightmare.” But we were obligated to try, my colleague believed. Otherwise, after all, he would die. And we couldn’t have that.
This was not the first time my colleague and I saw things from opposite sides of the circle of expert opinion. We were often 180 degrees of one another. But my colleague had my experience beat by more than three decades, so I stepped aside to consider another way of seeing things. Maybe he was right. Perhaps I was one who need to move around the circle's arc a bit.
Two months later the vascular surgeons saw Mr. J. They felt a carbon dioxide venogram could determine if the central blood vessels were still clotted off, without the risk of kidney failure that regular contrast promises. I wasn’t aware of it. They felt even if there was still central blockage, he would be a candidate for a HeRO graft. The HeRO graft has recently become available and could be surgically implanted to bypass his blockage and allow dialysis. I hadn’t thought of it.
My face flushed as I read the notes on the computer screen. Had my ignorance and soapbox on the "overuse of dialysis in this country" left me blind to the possibilities that would save a patient’s life? I felt stupid. Embarrassed. Kevorkian.
Another two months passed and Mr. J got his carbon dioxide venogram. All the large deep veins in his chest remained blocked. I wish I could say he got his HeRO graft a few days later and is happily having his dialysis without all the anticipated drama. Can’t do that.
Mr. J died the next day, five months after we met.