Glenn Fleishman, an excellent writer and cancer survivor, is setting up the framework for a non-profit service offering weblogging tools and services for people with chronic and life-threatening diseases. This is something important. Help him if you can.
About two-and-a-half years ago I was diagnosed with end-stage renal disease (permanent kidney failure) and I’ve been on hemodialysis several times a week ever since.
One of the things that would have really helped me in the early stages (still would, actually) is if other ESRD patients would take the time to write about their experiences. The questions I had were nearly overwhelming: Will I feel better? Is this going to hurt? How long? Why do I feel so bad? What is that machine for? What exactly is happening to my body? What are my options? Why are those needles so big?
I wish I had found John Martin’s photographs and essays when I first got sick. While Martin wasn’t on dialysis for long (never had a fistula, for example) his experiences shed a lot of light on what I could expect.
For the past two weeks, I’ve been in and out of the hospital with problems with my fistula, the access in my arm in which 15-gauge needles are placed and connected to a machine to filter my blood. The first trip entailed a fistulagram and angioplasty surgery by a radiologist. Because he didn’t listen to me explain what the problem was, he roto-rootered the wrong part of the vessel and I was back in the hospital within a few days for a simple ultrasound.
If the dialysis nurses can’t consistently stick the needles in my fistula, it’ll be back to the hospital for another catheter and an artificial graft. Here’s hoping my fistula remains usable.
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