Samuel Alexander is a 35 year-old man with active drug use that led to end-stage kidney disease. Recently he added endocarditis, an infection of a heart valve, to the list of things wrong with him. It’s hard to remember he is only 35 because when he talks, his lips pout and his jowls sag like an old man because he has no teeth. He was in the hospital for 20 days, half of them in the Intensive Care Unit. Doctors and nurses worked around the clock to save him.
Now he is living at a skilled nursing facility, to make sure he gets his full course of antibiotics to treat the endocarditis. Him getting the several weeks of needed antibiotics was unlikely if he was not institutionalized, it was thought.
He has been my patient for a couple of years now. I see him on dialysis when he isn’t in somebody’s ER or hospital bed, or living on some street with no way to get to dialysis, or too engaged in other activities to show up for dialysis.
I saw him 6 days ago.
“They told me I had this thing on my heart valve this big,” he said, measuring to the first knuckle of his right thumb. “They told me it was flicking off parts into my liver and my brain.”
He was almost proud. He had a new story to tell that would gather folks around him in amazement.
“Did anyone tell you how you got endocarditis?”
He was quiet.
I explained the source most likely for him. “It comes from using dirty needles or not cleaning the skin well enough before using.”
He looked at me innocently, like I was giving him new information.
“Have you been using?” I asked Samuel. I knew he was in a methadone program, to replace his cravings for heroin. I knew his primary care doctor believed he was turning a corner and was advocating for the dialysis social worker and me to make arrangements for Samuel to have a prolonged visit with his mother up north to help him “stay clean” of drugs. I knew his case manager had been accompanying him to appointments for housing and to see doctors.
“No more than usually,” he said.
Patients like Samuel are common in my practice. So much so, I started a research project to look at just how many dialysis patients around the country were also drug dependent and just how the drug dependence limited their life. Our research group found that in the first year of starting dialysis, the young, drug dependent patients were twice as likely to die as those who were not drug dependent. That drug dependent young people on dialysis were 600 times more likely to die than those not on dialysis.
I’ve been struggling with how to write up the results into a paper with a message. I’ve been struggling to write the paper because it’s not politically correct to suggest we should not be trying to save people actively trying to kill themselves. And because it is downright blasphemous to suggest maintaining the Samuels of the country on dialysis is not a smart use of our health care dollars. I asked some other researchers for help in framing the paper.
They thought the answer was more health care. Maybe we should add drug counselors and psychiatrists in the dialysis unit when the Samuels were literally a captive audience. This would save them from themselves. As if they were children who needed our parenting.
Not a paper I am willing to write.