Tess Harris, Chair of the Polycystic Kidney Disease Charity organised a reception in the machine room of the MOSI – the Manchester Museum of Science and Industry to celebrate amazing kidneys and the amazing people and families who have adult polycystic kidney disease. Families with polycystic kidney disease are in a special position because of their experience of renal failure in the family, the previously thought inexorable decline in kidney function and inevitability of end stage kidney disease and the fact that opportunities for live donation are less.
I recently had to comment on the impact of the genetics white paper “Our inheritance, our future – realising the potential of genetics in the NHS” that was published in June 2003. By chance, as I was compiling a response Tess sent me the following (spelling unchanged from the original):
“I just wanted to say hello really, I found out I had PKD 2 years ago, after my mum found out she had it, it also emerged that my nan had it too and was on dialysis for 12 years before she died. I saw my GP who referred me for a ultrasound. Lovely NHS gave me the ultrasound and the radiographer told me I had polycystic kidney disease. That was it no supportive sympathetic chat nothing just goodbye. I went and sat in my car in the car park and cried my eyes out. Had 3 appointments since then with renal department, who take blood but I have yet to know the results of the tests, all a bit crap really. Anyway that’s my story so far”.
Young person contacting the PKD online support group 18 February 2008.
There is a huge need for better genetics education, not only for medical professionals but also for allied health professionals and nurses as renal care is becoming increasingly nurse led and of course for genetic counsellors.
I am encouraged by the amazing work our colleagues in genetics and molecular biology have done to explain the underlying processes that lead to cyst formation. Clinical trials are also underway and hopefully will delay kidney damage in this condition.
There is lots we can be doing already. Andy Williamson, Saxophonist with Big Buzzard and the Organ Grinders who led the jazz quartet at the MOSI PKD reception was told “don’t worry about the cysts, there’s nothing you can do about it”. Well, no magic wand but with better blood pressure control the need for dialysis would have been delayed and with planned management, Andy’s live donor transplant from a fellow musician could have been done before Andy needed to start dialysis. Why does it take up to two years on dialysis to transplant list somebody with polycystic kidney disease? Why aren’t the overwhelming majority of people with PKD listed pre-emptively??
Tess and her colleagues arranged for a polycystic kidney that had undergone plastination – Dr von Hagens groundbreaking method of halting decomposition and preserving the body and organs, to be on display at the reception. It was amazing as were the other normal, abnormal and diseased kidneys that he had on show in the main exhibition. Plastination is the process of extracting all bodily fluids and soluble fat from specimens and replacing them with vacuum forced impregnation with reactive resins and elastomas such as rubber, silicone and epoxy. The specimens are then cured with light, heat or certain gases to give ridigity and permanence. In addition to highlighting amazing kidneys, the exhibition includes particular emphasis on sport and exercise. It is amazing.