Five years on, self-care has become shared care—shaped by autism, changing access and renewed possibilities.
When self-care meant needles and bloodlines
Five years ago, I was a self-care dialysis patient.
The photograph accompanying this post was taken on 18 August 2021. I was actively involved in almost every part of my treatment: self-cannulating my fistula, connecting myself to the dialysis machine, disconnecting at the end of the session, and even removing the needles from my own arm.
There was something deeply important about that independence. Dialysis governed many hours of my week, but self-care allowed me to retain a degree of ownership over what was happening to my body. I was not merely receiving treatment; I was participating in it.
Much has changed since then.
In late August 2023, my fistula failed. A new permacath was inserted into my chest, and it has been my access for dialysis ever since. I have been fortunate with it so far. It has continued to work, and I have avoided some of the complications that can accompany long-term catheter use.
Losing the fistula also changed what I could safely do for myself. Self-cannulation and needle removal were no longer part of my treatment, while connecting and disconnecting through the permacath had to remain the responsibility of the dialysis staff.
From self-care to shared care
But I did not simply move from self-care back to having everything done for me.
I am now a shared-care patient at B. Braun Wellstone Midlands Renal Care Centre in Port Laoise. Recently, the unit has worked with me to regularise what parts of my treatment I am able—and permitted—to undertake for myself. We have also recorded how I prefer my care to be provided so that dialysis can remain as positive an experience as possible.
Working with my autism
A large part of this is working with my autism rather than against it.
Dialysis is an intensely sensory and repetitive experience. It involves alarms, bright lights, physical touch, changing staff, interruptions and procedures that happen very close to the body. Clear communication, predictability and being consulted before something is changed are not optional niceties for me. They help me to feel safe, remain regulated and participate properly in my own treatment.
Shared care recognises that I know both my treatment and my own body. It allows the clinical team and me to work together, with each of us understanding what I can do, what staff must do, and how that care can be delivered well.
Another vascular appointment
Now another possible change lies ahead.
Yesterday, a letter arrived confirming an appointment with the vascular team. I already know that Professor Mellot would like me to consider trying for another fistula. He has said that advances in vascular surgery may mean the surgeons could resurrect a fistula in my left arm.
For now, that possibility remains exactly that: a possibility.
An appointment does not mean that a decision has already been made, nor does it guarantee that surgery will be possible or successful. It means that the conversation is beginning again. The surgeons will look, assess and explain what may—or may not—be achievable.
Then we will see what happens.
The prospect brings mixed feelings. A working fistula could reduce some of the risks associated with a permacath and might allow me to take on more of my treatment again. At the same time, I remember the needles, the procedures and the eventual failure of the fistula I had. There is history in that arm, as well as hope.
Self-care beyond the dialysis unit
Self-care also continues beyond the dialysis unit.
On the medication side, Andrew has been reprising his role as my medicine guardian. Last week, I achieved 100 per cent adherence to my regular medication routine. That may sound like a small thing, but managing a large and complicated collection of medicines every day is work. Having someone alongside me—prompting, checking and encouraging—makes a genuine difference.
I am still not quite there with my phosphate binders. They have to be taken with food, which means remembering to bring them whenever we go out. That remains much harder than taking medication at a predictable time at home.
Progress does not have to be perfect
But progress does not have to be perfect before it counts.
Five years ago, self-care meant needles, bloodlines and knowing how to operate part of a dialysis machine. Today, shared care means knowing what I can still do, agreeing how the rest should be done, and ensuring that my autism is accommodated rather than treated as an obstacle.
It may also mean attending another vascular appointment, asking careful questions, taking my medication and remembering to put the binders in my bag.
The practical details have changed. The underlying purpose has not: finding whatever ways I can to remain an active participant in my own care