Graduating from Dialysis Part 1
Becoming one of the small percentage of people who get off dialysis
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My dialysis nurses would speak of people getting off treatment without a new kidney like it was mystical folklore. “I’ve seen it happen,” they’d say as if they were old sea captains talking about mermaid sightings.
Now I get to be a mermaid- and swim in the ocean again.
T
Thursday, September 29th, 2022 - Day 217 of dialysis
On this day in 2017, I woke up in a Big Sur farmhouse at the edge of the world. I ate fresh eggs with coffee and milk - made right from a cow named Leila. I jumped on a trampoline in the yard and stared at the sea. I put on a white dress and married Zach surrounded by our families, the sound of the waves, and chatty sea lions.
Now again five years later, I wake at the beginning of another new world. I hadn’t wanted to celebrate for fear of a twist of luck, but today, I’m going to have my port removed.
I am officially done with dialysis. Over two hundred days of dialysis - what a journey.
I was honestly surprised when Dr. Sherif shared the news. I hadn’t anticipated getting off so quickly, but as he slowly decreased treatment, my kidneys began to show signs of improvement. Nothing dramatic, but steady and stable improvement.
We take July to daycare. She’s getting so big, all head and eyes. She had just said her very first word over the weekend. While in her tiny wheeled saucer I waved to her and said “Hi” and she waved and said “Hi” back to me.
Zach was traveling and I pulled out my camera and tempted her to repeat it.
And she did. A big loud, “Hiiiiiiiii!” accompanied by an almost full body wave.
It’s a diplomatic first word. Mine was “dada” and what a disappointment he turned out to be.
Hi is a lovely first word. I think it says a lot about her. She’s a very warm baby. Friendly and eager to make friends. She likes catching a stranger’s eye and charming them. Now she could greet the world. It’s her oyster.
To celebrate our anniversary, Zach and I have lunch reservations at a posh hotel in Beverly Hills before my port-removal procedure. We gobble up artfully plated delicacies and get a slice of chocolate cake before I pop a Xanax. I’ll be awake for the procedure.
We drive to the hospital and Zach holds my hand as we walk through the hospital plaza. The ICU building shadows us as Zach shudders.
“Is it hard being back here?” he asks in a way that it’s clear it’s hard for him.
After a pause, I say, “No. I’m proud to be back here.”
We make our way to the fifth floor where the procedure will take place. It’s the same floor where I spent most of my time. I walk down the hall and see one of my clinical partners. The one who looks like Troy Polamalu.
“Do you remember me?” I ask hesitantly.
He doesn’t recognize me.
I pull down my mask, “I was here a long time. I had a baby.”
His eyes light up. “Yes! I do remember you!”
Then out pops one of my favorite nurses, Amelia. And I felt like it was a good omen.
“Hi Amelia! Do you remember me?”
“Oh my goodness! You look so good. How are you?”
“Good. I’m here to get my port out. I’m getting off dialysis.”
“That’s so great!”
It was a scene I had imagined in my head, coming back triumphant. And here I was living it. It’s tough to unpack all the events that led me to this strange surreal moment. The obstacles that I had to overcome. The mist of uncertainty that I had to keep moving through. This felt like the other side of something.
Susan Stontag famously said, exploring illness and how it’s used as metaphor, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
I’ve built a small bridge on the river between these kingdoms. I live now on this bridge.
Now, I have a disease, but I am no longer sick.
I also will no longer be formally disabled. After months of coming to terms with all my judgment and all my bias, I now will be on the other side of disability, although forever changed.
There are many people who live on the edge of disability. It’s a group often ignored, these interlopers, like myself, moving in and out of “able” like the line between is thin and transitory. I am part of this population. Feels a bit like being a reluctant traveler- in a place but not rooted, forced there, but often leaving and coming back again when the whims of the body bully me again.
I pass my old room and think of the Pissaro bridge painting, Pont Neuf in Afternoon Light. It feels so far away now.
To be continued…
Did you know…?
My husband Zach has an amazing music discovery and interview podcast! He’s booked incredible guests from Ani Difranco to Smash Mouth, St. Paul and the Broken Bones to Alison Russell, The Lumineers to Lake Street Dive. Hit subscribe & download and listen to this goodness wherever you get your podcasts!
Reader Comment of the Week
“So important that you not only honor and respect the continuous blessings that bolster your life, but also that you take the proper time your body/mind requires to recalibrate and rest. Peace Be Still.” Betsy Lupetin
If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo
I started writing this when I was on dialysis. It’s intended for folks on a healing journey or those caregivers and family supporting someone with a challenging diagnosis. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.
Thanks to new paid subscriber Hannah Parikh. You’ve been such a source of love on this journey since day one. We are so grateful for you!
Thanks to new paid subscriber Destiny Dawn Taber- sending so much love to you, Miles, and Felix. I know you’ve had your own family medical journey and you all inspire me!
Thanks to long-time friend John Pick. I have always valued your creativity and kindness. I appreciate you.
Thanks to new paid subscriber Toni Peel- So grateful you’re here and you’ve found value in RDG. Drop me a line and say hi sometime!
Thank you to Roy Lenn and Richard Burwick for your founding level donation.