Last year nearly 400 people died waiting for a transplant, says Candida Moss. ‘Presumed consent’ could have saved their lives
I was diagnosed with chronic kidney disease in August 1996, when I was 17. Twenty minutes before the diagnosis I was on top of the world: I had just passed my A-levels and was looking forward to a long summer holiday before going up to Oxford. Then my kidney specialist informed me that without treatment I would have renal failure within three months.
In July 2002 the specialist said that I had between two and four years before I would need dialysis or a transplant. Even though I’d always known this was a possibility, I had never really thought about what needing a new kidney meant. I had learnt to deal with the pain and inconvenience of frequent hospital visits for infusions of antibodies or iron, but now I was confronted with the truth: I had only a few years either to find a kidney or go on dialysis.
My mother instantly offered to be a ‘live donor’. This is someone who provides organs that could be called ‘superfluous’, like a kidney, part of the liver or part of the lungs (as opposed to a non-heartbeating donor, who — according to the present legal framework — has opted in to the organ donor programme and wishes to donate all their organs when they die). In kidney transplants it is imperative that the genetic make-up of the donor matches that of the recipient and that the donor is in perfect health, so my mother began the intensive testing required. The testing took roughly 18 months and included kidney biopsy, scans, heart, liver and lung tests, numerous blood tests and psychological evaluations.
A couple of weeks before the results of the final tests, my mother developed severe pneumonia and the doctors discovered cancerous cells in her lungs.