She was asleep when I walked into the hospital room, so I gently stroked the back of the hand resting on top of her other one on top of the faded blue cotton blanket. She opened her eyes immediately and wide to look at me. She smiled at the corners of her mouth, but that smile quickly twisted into a face filled with worry. “Oh, Dr. Grubbs, I’m still in a quandary.”
My mouth turned down, now mirroring hers as I grabbed the wooden arm of the high back navy blue chair in the corner. I pulled it close to the bed and sat.
“Why are you still in a quandary?” I asked.
“Everybody wants me to get that catheter and switch to hemodialysis,” she whined more like a little girl than the sixty-something year old woman she is. She stroked the space below her left clavicle where the tails of a catheter might lie. “What do you think?”
She had been my peritoneal dialysis patient for a couple of years now, her daughter taking care of her dialysis at home through the catheter in her belly. Every day, the daughter would attach a two-and-a-half liter bag of clear colorless dialysis fluid to the catheter and allow it to drain into the space between skin and the membrane covering the organs beneath over about 20 minutes. Disconnect and allow that fluid to slosh around for a couple of hours, pulling toxins and extra fluid and potassium and such across that membrane. Connect again and in ten minutes drain out three liters of clear yellow waste. Repeat 3 more times, like the number of as-neededs on a shampoo bottle’s lather-rinse-repeat instructions.
In between repeats my patient would sit up, swing her legs over the side of her bed, and stand. From there she would turn and have a seat on the bedside commode or in her wheelchair. From the wheelchair, she would go to doctors appointments. And occasionally, the opera.
It was a life she wanted to go back to.
But after weeks in the hospital being treated for an infection not related to her dialysis, she could no longer stand or swing her legs over the bed or even sit up in it without the help of 2 others. It was one more help than daughter could provide at home, so going home was not an option.
Because we are currently a country of extremes and skilled nursing facilities don’t do windows or dialysis, the options were only two: transitioning to hemodialysis or stopping dialysis. Stopping dialysis would mean my patient, who still had a tiny bit of kidney function would likely die in months, maybe weeks. Exactly when we could not predict.
“I want to be here to see my first grandchild,” she said.
“That is a wonderful goal,” I said, knowing she had 2 other daughters. But how much time would achieving that goal require, I wondered. Was anybody pregnant? Was anybody planning to get pregnant?
One of three daughters was married and trying to get pregnant. We were at least a year from getting my patient to her goal.
“Well, in that case, I think hemodialysis would give you the best chance of reaching that goal.”
But "best chance" does not mean "for sure". Were it not for her daughter, my patient would have already been in a nursing home. A seminal study showed that a year after starting dialysis, only about 3 in 10 nursing home patients was alive. And only 1 of them was able to think as clearly and do as much as they could when they started. My patient had already beaten those odds, so either she would continue being an exception. Or her time was short. Regardless of what we did—because dialysis could not change all the reasons that confined her to a wheelchair before dialysis. Dialysis couldn’t even change the fact that end-stage kidney disease is end stage. She would need to decide how much she would be willing to put up in hopes of reaching her goal.
Transitioning to hemodialysis for my patient, I explained, would mean being transported by ambulance on a gurney to and from dialysis. It would mean being moved from the nursing home bed to the ambulance gurney to the dialysis unit gurney and back three times a week. In between backs, would be 3 hours on the dialysis machine. No opera.
“I will support you in whatever choice you make,” I said staring into her pale blue eyes. “And we can talk from time to time and see how you’re doing with that choice. If it is no longer what you are willing to put up with, we can change the goal and do something different.”
“I’ve made up my mind,” she said. “I will get the catheter.”
“OK. How do you feel about that decision?”
“I’m happy with it.”
“Then so am I,” I smiled, truly happy that she was no longer in a quandary. And that I helped her make that transition.
dont worry be happy