Patients' experiences

From EdREN, the website of the Renal Unit at the Royal Infirmary of Edinburgh, Scotland


Read Joyce and Elizabeth's transplant experiences

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 Kidney Information Centre has a lot of excellent links and information, with special detail on two unusual dialysis patients, James Michener (a best-selling author who stopped his dialysis when he was 90) and another doctor, Peter Lundin. Spend time looking at the other excellent resources for patients - about the hazards of missing dialysis, or cutting it short, and the importance of looking after your vascular access, and the meaning of blood tests.
  Experiences from the Singapore Kidney Dialysis Foundation are excellent, and don't pull punches when it comes to bad outcomes either. Click on 'Patients sharing'.
  The compilation of patients' and carers' experiences from Cardiff is good.
  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.
Transplant patients experiences - there is a really excellent series of accounts on the UK Transplant site.
  Do you know of other good accounts? Or have your own? Let us know at renal@ed.ac.uk

 

Go to information about dialysis and transplantation from EdRenINFO

Go to the South East Scotland Kidney Patients Association pages

Go to the Unit home page

Go the the EdREN home page

 

This page created January 2002, update Mon, Jan 12, 2004. Contact us at renal@ed.ac.uk with comments.