Managing a Nephrostomy and Other Medical Devices as an Autistic Person

Tips for coping with ostomies, catheters, and more with sensory issues

Photo credit: Galina Nelyubova on Unsplash

I found myself in the hospital on Christmas Day last year. Signing the consent forms to have a tube placed inside my kidney (nephrostomy) to drain it into a bag I’d carry around, I was crying uncontrollably. I was in a different city away from home, and I didn’t know how I’d cope with a tube sticking out of my back.

Three sessions of shockwave lithotripsy hadn’t broken up the kidney stone, and I was listed for surgery that would pass a small camera and a laser through my urethra, bladder, and into my kidney to blast the stone to smithereens. Only while I was waiting for a date, the stone moved and blocked the only exit from my kidney. I had sepsis and hydronephrosis, where fluid builds up inside the kidney. I was in a lot of pain.

A urologist came to see me on Christmas morning in the surgical triage unit. As he went through the risks of the procedure versus not having it done, I worried about how I would cope with having a medical device attached to my body. I’d start a new job in a couple of weeks, and that didn’t leave much time to figure this out.

I was sedated for the procedure, but awake. It was quick and uneventful. I was…