By Peter Laird, MD
Patients undergoing dialysis in America units frequently complain of the misery of their existence with headaches, severe thirst after sessions, cramps, nausea, vomiting, frequent bouts of low blood pressure and the misery of an ever present fatigue that permeates every aspect of their lives. It is no wonder that so many people hate dialysis. These attitudes were not shared by those few lucky to be the first pioneer patients of dialysis in the 1960's in London and Seattle especially, several of whom still are alive today more than forty five years since they were first saved by this therapy (here). The first patients in England are dubbed the "lucky 13."
The Royal Free programme
This photograph of 'The Lucky Thirteen' taken in 1965 shows patients treated at the UK's first centre for long-term dialysis at the Royal Free Hospital, London, with their consultant Dr Stanley Shaldon (centre, front row). Olga Hepple, left of Dr Shaldon, featured in a Pathe film of very early home haemodialysis in the UK. Three of them featured in the first episode of the BBC's Tomorrow's World in 1965, which you can see online, a remarkable historical record.
With the median survival for America dialysis patients today of 36-38 months, the thought of surviving for nearly half a century with renal replacement therapy is not the current ideology of most involved with our dialysis industry. With equipment we consider primitive, the article in the history of nephrology describes what these unique patients have in common:
What do they have in common?
All recognise that they have been lucky. In the early days, it wasn't easy to get dialysis but the struggle to get onto treatment was just the beginning. All are grateful for the opportunities that they did not expect to have, and to their families and the medical teams that shared these struggles.
All of the very long term survivors have spent long periods transplanted, but it is interesting that several of them waited years or decades before their first. This may have saved them, as the risks of transplantation in the early years were extremely high. None of the very early transplant recipients are still alive. Most longterm survivors have had long periods of very long-hours dialysis, and this may be important too.
All of these patients through a combination of extended hours dialysis in the beginning are alive today as a testimony and legacy of Belding Scribner who prescribed longer treatments for any patient who was not rehabilitated. The patient killing metrics of urea kinetics and the terms "adequate dialysis" are foreign to this story. Dr. Robin Eady waited for twenty five years before he agreed to renal transplantation. He is now nearly fifty years as a renal patient. The will to live and comply with the difficulties of treatments is now his reward for a life well lived, not only as a patient, but as a practicing and successful physician who is highly regarded in his field of dermatology.
Perhaps the element most lacking for patients today is that of hope which has been replaced by despair and complacency by so many patients. The number of patients who could benefit from home hemodialysis is much larger than those that come forward even when offered. The examples of these remarkable patients serves as a reminder that dialysis truly is the first gift of life in the history of renal replacement therapy. The "lucky 13"and those from several other pioneering programs in the 1960's should remind us that we can do better in America each and every day when we see several still alive today. The legacy of those who went before us and are still alive speaks of how far we have fallen from the precepts of the pioneers of dialysis. The "lucky 13" reminds us that it is not too late to recapture the wonder of life and rehabilitation from a machine.
Perhaps one day, American nephrology will remember the history of dialysis and ask the simple question, where have we gone wrong? Perhaps the answer is the day that this specialty began to pay more attention to biochemical parameters than the patients languishing in their dialysis units. America is not doing well in this "nobel experiment." It is time to learn from history and from those still alive. It is not too late.