In response to feedback from you and your fellow community members, Responsum for CKD is featuring guest contributors to help diversify our content and add unique and experienced voices to the conversation. The following is a candid and honest account from a father explaining his lifelong need for dialysis to his young daughter. 

At the first crack of thunder, my daughter leaps out of her princess carriage bed and skitters out of her room.  She turns the corner and jumps into my wife and I’s bed.   Quickly she slips her feet beneath the sheet pulling it up over her head. I exit the bathroom and scan the room to notice a tiny lump underneath the sheet. 

“I guess it was my imagination,” I say loudly in a comically clueless voice so she can hear.   

The lump giggles.

“What was that?” 

I reach for the closet door, swinging it open:

“Ah ha!” 

Nobody’s there, but there’s another burst of giggles. 

After performatively checking another closet, a couple of drawers and under the bed–each time repeating myself and hearing more quiet laughter–I step to the side of the bed. I imagine my daughter is holding her breath, trying to sink deeper into the mattress, struggling not to laugh as her eyes follow my silhouette through the light blue sheet. I’m sure she’s waiting for me to swiftly pull the blanket off with a loud and boisterous “GOTCHA!”. 

But tonight I take my time with the day’s last dance. I step closer to the bed, as if to make the discovery, and then retreat to my rocking chair.  I spread out my protective pads on the tray table and I unwrap my supplies. The only sound in the room is the swoosh of the saline circulating through the machine and the hum of its pump. 

From the corner of my eye, I see the sheet slowly slip down her forehead exposing her deep brown eyes.  I jerk my head her way only to see the sheet flip back over her head.  As I turn back to continue, a loud beeping sound startles her.  

“It’s OK, sweetie, it is just the machine.”  

She knows this, but it still surprises her. Now, sitting up, she watches as I come toward the bed where my hemodialysis machine is inches away. I sit down beside her, reach for her with my left hand and press a button to mute the alarm with my right. I pull her close with a hug. 

“How did you get here?  I thought you were sound asleep in your bed!”  

“Dad you knew,” she says.  

“I did not,” I respond unconvincingly.  

“You can lay here until it’s time for my treatment. Close your eyes and try to fall asleep, sweetie,” I urge while bending over to give her a kiss goodnight. She jerks her head and shakes it slowly with a tight-lipped smile.

“No kissy, daddy,” she says, playfully. 

“OK,” I say and get up and return to the tray table.

I open the 30cc syringe and the two 10cc syringes, and attach the needles. I load them with the appropriate amounts of heparin. Then I unsheathe the large 15 gauge needles with their long tubes attached. I place the bandages next to them and start unrolling lengths of silk tape, securing them to the table. 

As I do this, my daughter watches. Having completed my set up, I get up from the rocker and head back to the machine. Her delicate face is bathed in red light from the illuminated numbers.  I sit down next to her and say, “Please close your eyes, my dear.  You need to go to sleep.”  

I grab the tubes from the cartridge in the machine and start snapping them to remove the air bubbles.  

“Daddy, when will you stop doing dialysis?” She asks matter-of-factly. I let go of the tubes, turn to her and put my freckled hand on her cheek. “I’m going to do dialysis for a long time,” I tell her. “Long enough for you to get much older, go to college, have a career and get married and have children so that I can be a Grandpapa.”  

After a moment, with sleep closing in, she asks: “Then will you stop dialysis?”  

Trying to appear unfazed, I respond, “I will be on dialysis until I go with God.”  

Her eyelids now heavy, she silently mouths “night-night.”  

I lean over and press my forehead to hers then return to my chair. 

I put on Handel’s Water Music, Suite No 2 and listen while I swipe the ridge on my left bicep with a Betadine pad. I trace the burnt, red line with my clean fingertips, feeling the outline of the graft just below my skin. The narrow graft connects a vein and artery enabling blood to easily leave my body and return after a quick trip through the tubing and artificial kidney.  

As my daughter sleeps, I pick up one of the 15 gauge needles, take aim, wince and  slip it into my arm. The blood immediately fills the tube, relieving my anxiety. After placing the other needle a couple of inches up my arm from the first, I use the tape to secure them. I turn off the light and walk back to the bed where I push Antonia to the middle. I connect the tubes in my arm to the tubes on the machine and press “go.”  

The blood comes out of my arm and pushes the saline through the kidney and into my arm through the return needle. I make some adjustments, toggling the buttons and turning on the heparin pump. I grab my e-reader, turn off the bedside lamp, lay my head down and take a last look at the numbers.  The tubes run garnet-red, everything is secure and I am ready for eight hours of cleansing, removing water and sleeping.  

Antonia lies peacefully at my side, her mom will move her to her room when she comes upstairs.  I listen to the rain falling and my daughter breathing.  The lightning and thunder are now miles to the East. I flick on the e-reader and settle into a Carl Hiaasen novel.

About the author:

Erich Ditschman is a national speaker, author, advocate, and blogger. His topics include kidney disease, dialysis, kidney transplant, intimacy with dialysis, coming to terms with chronic illness, getting outside, and discovering one’s best life in the face of adversity.