It was 2016 and Cameron Whitley was gravely ill. He was urgently in need of a kidney transplant, which should have been no problem. He was young and otherwise healthy. He had medical insurance. He even had several gallant friends willing to undergo major surgery for him.
There was a catch, however. His doctors were missing a crucial piece of information – one which, until then, no one had thought to look into. Without it, they weren’t able to put him on the list.
And so, more than a year after he first turned up at a hospital in the US Midwest with mysterious ear pain – eventually leading to a diagnosis of chronic kidney disease – he was forced to go on dialysis. By this point, his organs were functioning at less than 8% of their normal capacity.
But here again, Whitley hit a snag: his doctors were in need of another vital piece of information – and without it, they couldn’t work out how often he would need this treatment. They had to guess; they got it wrong; he became yet more unwell. All this time, his friends were practically throwing their kidneys at him.
Finally, just as Whitley, who is an assistant professor of sociology at Western Washington University, was approved for a transplant, his dialysis treatment led to massive blood loss and the operation had to be delayed. “It was really hard. I was horribly sick,” he says.
What was going on?