The SESKPA is the patients’ association for renal patients in Edinburgh, Lothian and the Borders.
Of additional interest, try the following:
Nothing brings home the reality of renal failure as much as talking to people who are suffering from it. Almost as good is to read good written accounts from patients who have gone through it. Some of the accounts listed here are just typical, some are unusual, but many are remarkable.
Professor Robin Eady was a medical student when he discovered that he had renal failure. In 1963 almost nobody received dialysis for chronic renal failure, but he managed to, by going to Seattle, where the first long-term dialysis programme was just beginning. Here he describes the shock of learning his diagnosis, and his experiences of haemodialysis in those very early days. He is believed to be the longest surviving dialysis patient in the world. Dr Belding Scribner wrote a tribute to him in 2000.
The Record-holders (History of Nephrology blog) outlines some extraordinary long-term survival tales.
Experiences from the Singapore Kidney Dialysis Foundation are excellent, and don’t pull punches when it comes to bad outcomes either.
Thom Green, drummer with Alt-J (scottishmedicalhumanities.org), developed end stage renal failure with his teens, and describes the shock and difficulty adjusting really well.
The kidneydirections site is sponsored by Baxter Healthcare. It gives quite good comparisons of dialysis types but also has stories each month from a ‘patient of the month’, which are generally helpful.
Famous American author James A Michener was on dialysis in later life. His dialysis calendar (hosted at Steve Fadem’s nephron.com) describes how he managed it, and gives a poignant account of a young man who didn’t cope. He eventually chose to stop dialysis; there is some discussion of that online. Our article on that.
Peter Lundin developed renal failure as a student in the 1960s – and later became a medical student and nephrologist. He lived for over 30 years, almost all on dialysis, with the same AV fistula. There is a slightly shambolic collection of his writings at nephron.com, and particularly suitable for doctors, an excellent article from 1999.
Do you know of other good accounts? Or have your own? Let us know at firstname.lastname@example.org