Blog entry by Arif Khwaja
There are 2 great reads in a recent BMJ - charting the journeys of 2 different patients through end stage kidney disease. Nicholas Evans author of The Horse Whisperer describes how both he and his wife developed AKI whilst on holiday secondary to mushroom poisoning with Cortinarius speciosissimus. Neither recovered and Evans gives an eloquent account of a gruelling life on dialysis - things such as the devastating impact of intradialytic hypotension and his naive belief that dialysis would give him more time to write - only to realise that he was simply too exhausted and disoriented to work either during dialysis or afterwards. Evans seemed to have had great care throughout and all ended happily as his daughter successfully donated a kidney to him. He movingly describes the transition from reluctance to accepting a kidney from his child to grateful acceptance.
Renata Carey is a diabetic lady in her 70s who describes a journey that all caregivers and patients will recognise. Much of the care she received at the Royal free Hospital, London was 'mostly excellent' but the sheer drudge and loneliness of dialysis takes its' toll. She described how nobody warned her that she would become anuric and how upsetting this was. Furthermore she reminds us how our best intentions as caregivers can seem simply seem ghastly to patients. For example 'self care' for dialysis patients, which is very much in vogue in the UK, is described by Carey as something foistered upon her - when all she wants is for somebody else to do the caring for her - and quite frankly who can blame her?
Whats striking is that what matters most to her on the dialysis unit is for is for staff to show " kindness, thought and imagination." Yet within the factory-like setting of the dialysis unit this is in short supply. Facing time-pressures, we get caught up in number watching - obsessing about about lab tests that mean little to patients and in many cases have only a marginal impact on quality of life. Most of all these journeys remind us how that essential element of great healthcare - humanity - is fiendishly hard to deliver and frequently elusive....All staff involved in the care of dialysis patients will learn much from reading and reflecting on these journeys....