On December 13th 2022, I did the best thing I’ve ever done and maybe will ever do: I donated my right kidney to a stranger. As we arrived at the Royal London Hospital, my mother was very nervous. I on the other hand was completely calm: I’d never felt as certain about any decision as this one.

It was something I’d been planning for a long time: I’d come across the concept initially while reading a book on ethics, Strangers Drowning by Larissa MacFurquhar, in my last year at university. As soon as I’d read the words on the page, I knew this was something I had to do. I read hurriedly on, scared I’d come across some factor that might prevent me from donating but everything more I learned about donating made me more certain it was right.

Researching extensively

Originally I had planned to think about this for one year, which eventually morphed into three due to the pandemic. I didn’t speak with anyone I knew about donating but I researched the topic extensively, including accounts of people suffering from kidney failure. It’s a brutal situation and I felt determined to go ahead.

After approaching the situation, I had to go through about a year of medical tests. Usually a task of this type, with numerous morning appointments and a need to chase hospital staff to keep the process going, would have been daunting. The strong sense of purpose I had made a real difference though and tasks I would have struggled with usually felt simple.

By the time I was approved to donate, I had informed my close family: they were surprised when they first heard my plans but I was well-prepared and was able to explain my reasoning clearly. Once I was on the register, a match came up instantly and my surgery date was fixed. I took six weeks off work, told my extended family and went ahead.

Being part of a chain

Giving was remarkably easy: I was put to sleep and when I woke up it was done! I spent four days in hospital and then about a month living like an old man and taking constant naps. I never had a happier Christmas, though I spent much of it dozing. By the time I returned to work it would often feel like it was all a dream, then I’d reach for the scars on my stomach and remember it was real.

All I know about my donee is that she was a woman, in her 40s to 50s, and that the operation was successful. She was part of a chain: a loved one of hers who had been unable to donate to her agreed to donate onto another person if she received a kidney. The chain was continued such that thanks to my donation, a total of five people received kidney transplants. One, I learned, was an eleven-year-old girl who had been on dialysis: I had never imagined I could help someone like that, but I’m glad I did.

The worst part about donating a kidney – you can only do it once.

Day to day, living with one kidney has changed nothing in my life. In the long-term, it shouldn’t have much impact on my health: the average kidney donor actually lives longer than the average non-donor. I feel I paid an absurdly small price given how much I was able to help others. This seems to be not an uncommon experience: I met another altruistic donor who gave at 65 and who said it has changed very little in his life over the last decade.

The worst part about donating a kidney is you can only do it once.

• In the UK, there are 68,000 people at any given time who are in kidney failure, including 1,000 children.
• Only 20% of these people will be able to get the transplant they need to survive.
• Altruistic kidney donations, despite the outsized impact they can make through starting chains, are still very rare, having reached 100 a year in the UK recently.

The fact that going in, I didn’t know any others who had donated a kidney wasn’t an obstacle to me as the benefits so clearly outweighed the costs. A strength of being autistic is being able to follow your own path and act on your own reasoning, without being concerned about whether something is a norm in wider society.

I did come out of the process, however, feeling there is a lack of awareness about the possibility of donation, about how great the benefits are and about how surprisingly easy it is. I’m keen to change this. I feel deeply grateful to all the medical professionals who enabled me to donate, as well as to my fellow donors in my chain. Donating is the best thing I’ve ever done; even so, I have more to do and more to give.

Useful links:

• The NHS website has lots of information about kidney donation.

• The book that originally inspired me was Strangers Drowning by Larissa MacFurquhar 
• Kidney care UK provides statistics around kidney failure and the history of kidney transplant. 
• The National Kidney Foundation explains more about kidney donation chains.
• giveakidney.org is raising further awareness of altruistic donation.

Guy