My nephrologist wrote it out by hand at the end of the appointment, a few lines on his prescription pad saying I needed vascular surgery — an AV fistula — to get ready for hemodialysis. He handed it to me and told me it was time to find someone in the San Gabriel ValleyV. I’d been driving to San Jose to see him for months, and that drive was about to end.
The lab numbers had moved. They’d been holding for a long stretch and this time they slipped, not by a lot but by enough that the conversation shifted from holding the line to preparing for what comes after.
I’ve been seeing him since 2023, the year my feet swelled up and a nephrologist told me I had Stage 3 chronic kidney disease. Stage 4 came later and stayed for a while. The whole point of the past three years, the diet and the appointments and the quitting of things I used to like, was to hold the line as long as I could, and he was the doctor I trusted to help me do that. That’s why I kept driving north long after it made geographic sense.
He didn’t fire me and I didn’t leave him. The stage of the disease he was best positioned to fight is the one that’s ending. Now the plan is to get ready for dialysis, do it well, and stay alive while doing it, which is a different kind of medicine and can happen closer to home.
Last weekend an old friend from the music scene died, a pioneer. Kidney failure was part of what took him, and he isn’t the first I’ve lost to a version of what I have. Every time I hear one of these the same thought shows up, that I’m going in the same direction, only slower. I don’t think it’s dramatic to say that out loud. It’s what happens when you watch your own future get rehearsed by other people, and I’d rather name it than pretend the thought doesn’t show up.
What I’ve had that some of them didn’t is runway. Three years of knowing was enough time to give up alcohol, cut out red meat and eventually eggs (which, if you know me, was not a small loss), and layer on the low potassium and low phosphorus restrictions that come with kidney disease — no bananas, no potatoes, no tomatoes, no dairy, no processed meat, no instant noodles. It was also enough time to sit with the fact that this was coming and to build a life that could absorb it. Preparation didn’t buy me more time, and I don’t want to pretend it did. What it bought me was not being blindsided, which is a smaller thing than more time but not nothing, and it’s the only version available if you don’t see the diagnosis coming until it’s already late.
The runway didn’t start in 2023 either. I gave up cigarettes back in 2014 when I was first diagnosed with Type II diabetes, which for an Indonesian isn’t only a health decision. You lose friends over it, and you lose business opportunities you didn’t know were tied to a shared habit until they were gone. That was the first version of this same fight, and it taught me early that the cost of staying alive isn’t always paid in dollars or discomfort.
There’s one more piece I want to put on the table because it changes the math. Because of the heart attack I had in September of 2025, my nephrologist told me I’m not eligible for a kidney transplant in the US, and going abroad for one isn’t realistic for me either. So the road ahead isn’t dialysis-then-transplant-then-recover. It’s dialysis, done as well as I can do it, for as long as it takes. If a transplant opportunity opens up down the line I’ll take it, but I’m not building the plan around counting on it.
I want to say the other thing plainly too, which is that the odds aren’t in my favor here, and if I come out the other side of this stretch in one piece, the win is bigger because of what it took to get there.
One piece of good news is that I’ve spent the past year running tests with my cardiologist after the heart attack, and everything has come back clean, nothing abnormal, nothing urgent. Cardiovascularly I’m in a stable place, which means dialysis will be the fight I’m fighting rather than two fights at once.
This road is long and I know that. The past three years already taught me what it looks like to change what I eat and change what I do and change how I understand my own body, and that work doesn’t stop when dialysis starts, it just moves into a new chapter. I’ve been getting ready for this for years, and I’m ready for years more.