Title: The record holders
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The record holders
A few patients have been on renal replacement therapy for over 45 years
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.
Ray Jones (extreme left of the front row; called 'Ronnie' in the TV prog) began haemodialysis at the age of 34 in 1963 using Stanley Shaldon's dual femoral catheter system, a tube in the artery and vein in the groin. The other three patients who started at this time did not survive the year, but Ray survived nearly 29 years until 1991 and was in the Guinness book of records in 1989 as the world's longest survivor sustained by only haemodialysis. He never had home dialysis, but continued to work until he was in his 60s. His wife Joan continues to campaign for Kidney Research UK.
Second from the right on the front row is Robin Eady, who was the world record holder for many years. Robin began treatment in Seattle in February 1963, when he was taken ill as a 21 year-old medical student and found to have advanced renal failure. He was put on an extremely limited diet and expected to die. However Life and Paris Match magazines had featured the first dialysis for end stage renal failure undertaken in Seattle by the group led by Belding Scribner. Robin was allowed treatment as he was to be trained as a technician to take the technique elsewhere. After 4 months he went on to the very new programme in Edmonton, Canada, for 18 months before coming back to the Royal Free programme in December 1964. Subsequently he returned to medical school and moved to Guy's, where he met he met his future wife Ann who was one of the first dialysis nurses. During his training he returned to Seattle for a year in 1973. He had home haemodialysis for many years until finally accepting a kidney transplant in 1987. He became Professor of Dermatology, retiring only recently, and in September 2011 he and Sir Peter Morris, his transplant surgeon, both attended Kidney Research UK's 50th Anniversary meeting in Edinburgh. More on early dialysis in the UK
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| Robin Eady 1966 |
The Seattle Programme
Robin Eady received his twice weekly 12-hour treatments alongside Clyde Shields, the first long-term dialysis patient in the world, who had commenced treatment in 1960, and two other patients. He died in 2017, at 54 years treatment (including nearly 25 years of haemodialysis) by far the longest survivor from these very early days, unless you include an identical twin transplant. More on Seattle and the beginnings of long term HD. More about Seattle history from Seattle.
Peter Lundin became a medical student two years after starting dialysis in Seattle in 1966, giving himself home nocturnal haemodialysis for 10 hours three times a week throughout his time at Stanford. He was on haemodialysis for most of his remaining life apart from 6 years transplanted in the 1990s, and had the same arteriovenous fistula for over 30 years. There are many testaments to the inspiring example he gave to other patients facing end stage renal failure. He became a professor of medicine, and a member of the group developing the K/DOQI treatment standards. He died in 2001 after 35 years of treatment.
Nancy Spaeth was accepted by the Life and Death Committee in Seattle in 1966, and after two years of in-centre treatment embarked on home haemodialysis. She recalls attending fund-raising events for Dr Scribner, Dr Henry Tenchkhoff holding her first baby, and participation in Dr Joseph Eschbach's first study of erythropoietin treatment. She had 4 transplants and two children, so has experience of all the ups and downs, and most of the different peritoneal and haemodialysis regimens.
Others from the mid 1960s
There are of course many more remarkable stories. In Edinburgh two patients are at or close to their 45th anniversary of renal replacement therapy.
Brian Tocher began treatment at Fulham Hospital (subsequently Charing Cross) in 1966, briefly intermittent PD then HD, with a few years of transplantation. Patricia LeBlack came from Guyana to London to work and began treatment at the Royal Free Hospital shortly after, but never had a transplant.
Most patients with such long survival have spent long periods transplanted. However Stephen Rifkin listed several patients with over 33 years of haemodialysis experience in a Medscape article in 2008.
Omitted from that list was Jean who commenced treatment in Oxford in 1966, thirteen years after experiencing Henoch Schonlein purpura, so presumably because of IgA nephropathy. She refused a transplant because she feared the side effects of steroids, and by the time of her death after 35 years in 2001 had experienced about 5,000 dialysis sessions and over 50 surgical procedures. During her final illness it was observed that only one member of staff had been alive (as a schoolboy) when she started treatment.
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.
Those I have met are remarkably tolerant of the young renal unit staff members who believe they know so much about the management of renal failure. It is difficult to know how much their personalities have been moulded by the circumstances, but all of them have been careful and have complied with the treatments suggested most of the time, without being so overtly obsessional that it has completely dominated their lives.
All of them have the most remarkable stories, many have had miraculous escapes, most have had very eventful lives. Many renal patients have extraordinary stories, but if you know patients with the longest histories, ask them about their early days. They have a lot to teach us.
We would be interested to hear any updates or additions. Please post in Comments below or send to renal@ed.ac.uk
Further info
On the historyofnephrology blog: Early HD; and early transplantation
Eady R Survival is not enough: reflections of a long-term renal patient. J Nephrol (2008) 21:S3-S6.
Friedman EA, J Bommer. Peter Lundin (1944-2001) the physician/patient role model. Nephrol Dial Transplant (2001) 16:2272
Rifkin SI Thirty-seven uninterrupted years of haemodialysis: a case report. http://www.medscape.com/viewarticle/580265
Spaeth N The nurse, mother of two and four transplants - Nancy Spaeth tells her story. Nephrol Dial Tranpslant (2007) 22:64-7
Winearls CG, CW Pugh. Staying one step ahead - one patient's dialysis experience. British Journal of Renal Medicine (2003) 6-9
A version of this article appeared in the Journal of Renal Nursing.
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