Preface:
Over the weekend, I saw “I Can Only Imagine 2” about the lead singer of MercyMe’s song “Even If“.
Bart Millard wrote the song during a “bad day” amid his son’s chronic health struggle with type 1 diabetes, expressing the pain of feeling like they were “losing”. This prompted the idea to write about having diabetes myself, but also going through peritoneal dialysis at the same time.
I’ve interjected parts from previous blogs into this post, as I sometimes share these posts on kidney-related Facebook groups.
There’s a certain kind of tired that doesn’t show up on a blood panel.
It’s not the tiredness that comes from a bad night of sleep or from a long week at work. It’s the tiredness that settles in when my body has been fighting on more than one front for a long time. When my pancreas quit back in ‘04, adaptation became the only option, and counting carbs and reading the signals became second nature. I had made peace with the fact that my life would involve extra math before every meal.
The assignment seemed clear.
Then my kidneys started failing. First, my pancreas. Now this. And the game changed entirely.
And somewhere in the middle of absorbing that reality, the truth of something I had written years earlier surfaced again:
“I was tired of feeling defeated, constantly losing a game I never wanted to play in the first place.”
When One Condition Wasn’t Enough
During the summer of 2023, my endocrinologist caught something in my bloodwork that suggested my kidney function was heading in the wrong direction. This isn’t an uncommon story for someone with Type 1 diabetes. The disease and the kidneys have a complicated relationship. Decades of up and down blood sugar, insulin management, and blood pressure fluctuations wear on the kidneys over time. Add in some hereditary factors, and I was hitting three for three on the risk checklist.
But knowing something is statistically possible doesn’t soften the blow when it becomes personally real.
The phrases “kidney dialysis” and “kidney transplant” soon entered conversations with my Nephrologist. And somewhere in the middle of those appointments, the reality settled in: I wasn’t a Type 1 diabetic managing one chronic condition anymore. I was now navigating a paired set of conditions. At the same time. In the same body.
The Overlap Nobody Talks About
Here’s what people don’t tell you about managing diabetes while on peritoneal dialysis (PD): the dual demands borrow from each other in ways that are genuinely difficult to explain to someone who hasn’t lived it.
With Type 1 diabetes, you’re thinking about what you eat, when you eat, and what your blood sugar is doing. Your decisions about food are never casual. There’s always a calculation happening in the background, like a program running that never fully shuts down. I’m thankful to have an insulin pump that takes a chunk of the work off my shoulders.
The peritoneal dialysis adds its own layer of dietary rules. Suddenly, you’re also managing potassium, phosphorus, sodium, and fluids. Bananas? Gone. Orange juice? My typical go-to drink when my sugar levels are low. Off the table. Avocados? Somehow, on multiple do not eat lists at once.
Since I was connected by tubing to the dialysis cycler, the tubing was 25 feet, which was not long enough for me to reach my kitchen. I had a mini-fridge in my room stocked with Mountain Dew in case I had a low blood sugar at night. Counterintuitive to consume liquid with caffeine at night, I know, but when you are low, all you care about is not being low.
Managing one restrictive diet is hard. Managing the overlap of both conditions is something else entirely.
I’d stand in a grocery store, looking at labels while bright fluorescent lights press down; the humming fills the aisle, and the label’s text seems to shrink under it all as the numbers blur and compete for attention. The potassium value stacks above the carbs, the two figures leaping at each other as if arguing over which one will cause me the bigger problem. Carbs for diabetes. Potassium for the kidneys. Phosphorus. Sodium. Fluid intake. Insulin timing. The answer to “What can I eat?” starts to feel less like a preference and more like a puzzle with several missing pieces.
The Dialysis Machine and the Glucose Monitor
Peritoneal dialysis meant that every night, I hooked myself up to a cycler machine that filtered my blood while I slept. I started at six hours a night. By the end of my eighteen months on PD, I had worked my way up to nine hours on the cycler plus Extraneal, a long-dwell daytime exchange that added another layer to the routine during the day.
A low mechanical whir filled the room before the first beep ever sounded, the tubing stretching across the floor like a line I had to cross each night without tripping over on the way to the bathroom. Meanwhile, my continuous glucose monitor was doing its thing on my arm. Sometimes the night began with sound instead of thought: a soft click from the cycler, a sudden alert from the monitor, two systems speaking their own languages at the same time. I lived inside a tangle of technology, a pair of systems running at once, each with its own rules, its own alarms, its own way of pulling me out of sleep. Both were trying to keep me alive, and both could jolt me awake at 3 in the morning with a sound I never wanted to hear.
Then came the beeping.
Not a gentle reminder, but a sharp interruption that cut through whatever rest I had managed to find. A single alarm could snap the room awake, the tubing stiffening in my hands as I checked for a kink or a slow flow. I went through three machines in eighteen months. Three. Some nights the beeping felt like a summons, and all I could do was answer it, telling the machine to try again. And again.
The Weight of Two Conditions
When you live with Type 1 diabetes, you get used to being the one who notices when things go wrong. When my sugar level goes low, my hands tremble in a way that other people around me aren’t experiencing. Sweat pours down from my head, and the world around me resemble a movie in slow motion, yet it was happening in my reality show.
Peritoneal dialysis asked me to add more awareness on top of that. More monitoring. More appointments. Monthly blood draws at the dialysis clinic. A rotating cast of caregivers adjusting things along the way: the doctor, the nurses, the dietitian, the social worker. Good people, every one of them. It was a lot of people watching over a body and mind that sometimes wanted to be left alone.
And here’s the part that’s hard to admit: some days, the weight of managing a paired set of chronic conditions felt like being tethered to a presence in my room that expected something from me every single day if I had the strength for it.
What Grace Looks Like at 3 a.m.
Max Lucado often mentions in his books, “God meets us in the ordinary, every day, unpolished moments.” I’ve come to believe he’s right. He didn’t mention that some of those ordinary moments happen in the dark, tethered to a dialysis machine, checking a blood sugar, wondering if this is what life is now.
The nights when I would have to wake up in the early hours taught me something. Not that courage fits any familiar saying, but that it feels like the moment my hands shook while trying to coax a stubborn tubing line to flow at full capacity, my breath catching until the machine finally accepted the connection. Sometimes it’s showing up for another night. Hooking up the machine. Checking the monitor. Trusting that morning will come, and that it will be a better than the night before.
I’m not going to tell you it wasn’t hard. It was hard. The kind of hard that sits with you even after the immediate crisis has passed. But I am going to tell you that even in the middle of all of it, grace showed up in ways I could feel, in the nurses who explained things twice without making me feel bad for asking, in the dietitian who helped me figure out what I could eat, not what I couldn’t, in the family and friends who showed up in small ways and large ones throughout the entire journey. And the prayers for me that never ended.
Two Chronic Conditions, One Story
Type 1 diabetes taught me to manage the unexpected. Peritoneal dialysis taught me to be patient with a body that was doing the best it could. Together, they taught me that the human spirit has more capacity than we give it credit for.
If you’re reading this and you’re navigating more than one medical challenge at a time, I want you to know something: you’re not weak for finding it hard. You’re not failing because it feels like too much. It is a lot.
Living with a paired set of conditions means doubled rules, competing fears, and grief cycles that can collide.
The bridge that carried me wasn’t built in a single moment. It rose one small act of courage at a time, one prayer at a time, one nighttime hookup at a time. And standing on the other side of it now, I can see what I couldn’t then: I was never crossing it alone.
