I recently learned that my piece, “When Dialysis Is the Wrong Approach to End-Stage Kidney Disease,” published on the CHCF blog nearly 4 years ago has proven to be evergreen, a story that lives on rather than dying on the vine of whatever is hot at the moment. Last year it was viewed more than 25,000 times, making it a top blog post.
In the piece I argued that not every old person approaching end-stage kidney disease should start dialysis. But judging by some of the folks who have reached out to me, many eyes don’t register phrases like “elderly patients over 75” and “who have dementia or ischemic heart disease.”
I understand why. People are deathly afraid of dialysis. In fact, most patients in my experience actually say, “I’d rather die than ever be on dialysis.” Dialysis has such a bad reputation that many are desperate for an alternative. When in truth, dialysis is the best option for the vast majority of people with significant symptoms of end-stage kidney disease who won’t be getting a kidney transplant within the month.
Sadly, I think I inadvertently contributed to this reputation. In my book, Hundreds of Interlaced Fingers: A Kidney Doctor’s Search for the Perfect Match, I described what dialysis was like for my soon-to-be kidney recipient and husband:
“Robert…had endured kidney failure and all that came with it. Having a dialysis catheter inserted. The catheter becoming infected. Sepsis, the infection spreading into his bloodstream. The catheter being removed. A new catheter put in. A surgery to create his fistula. Another surgery to revise his fistula when it wasn’t working properly. Nausea. Vomiting. Leg, back, jaw, hand, everywhere cramping. Dialysis Monday. Dialysis Wednesday. Dialysis Friday. For almost six years.”
While this description is true, some might get lost in my dramatic effect and think that every day was miserable for Robert, when in reality—most days were OK. What he called his new normal. Yes, he felt tired for a couple of hours after dialysis. Yes, he cramped when he took in too much liquid since his last dialysis. Yes, some days were hard.
But—and what it seems most people can’t imagine—he had life beyond dialysis. He worked. He hung out with friends. He went fishing. He fell in love. And then I gave him my left kidney.
I guess it’s just human nature to imagine the worst. I remember when a young man, just 33 years old (funny how our definition of what counts as young inches up as we age) walked into the dialysis center to have his first treatment. I’ll call him Charles. Charles played football in college and though he had lost some weight as people tend to do when their kidney function gets extremely low, he remained quite muscular.
As Charles walked toward the recliner assigned to him that day, his eyes fixated on a man in his sixties with both legs amputated below the knees because of his diabetes. Then his eyes landed on the developmentally delayed man lying too still on a hospital bed. And that was all he needed to see to know he wanted nothing to do with this dialysis thing.
“Mr. Charles is refusing to start dialysis. Do you want to talk to him?” the clerk called me to say.
“OK,” I said and he handed Charles the receiver.
“I can’t do this Dr. Grubbs. These people look like they about to die,” Charles said anxiously.
“Listen Mr. Charles, I know this is scary,” I said, my voice calm to counter his anxiety. “But you comparing yourself to the wrong people.”
I invited him to move his focus to one of my other patients, a muscular man in his late forties, who had started dialysis a few months earlier.
“He’s watching a movie on his DVD player or reading a magazine, right?” I said.
“Yeah. Looks like he’s watching a movie,” Charles said.
“Right. And tomorrow he’ll go to his job delivering furniture. That’s who you should be comparing yourself to. Big buff dude,” I said and went on to describe to him again what I expected his life to be like on dialysis until he, too, got a transplant.
“OK, Dr. Grubbs. I trust you,” he said and agreed to be connected to the dialysis machine.
And he was fine and believed he’d rather continue dialysis than die.