William's story: living with kidney disease

William Johnston enjoyed a career in catering before starting dialysis and having to adapt to a renal diet. Thanks to the Kidney Kitchen he's found his 'cooking mojo' again

"I have always had a passion for food, though I have perhaps been more a gourmand than a gourmet and I have the physique to match that statement! I played rugby in my younger days, front row prop forward – stocky and built like a bull.

"My passion for all things food led me to a hotel and catering management degree. After graduating, I went on to manage several different catering establishments in London, including a cocktail bar in Covent Garden where I convinced myself I was the Irish Tom Cruise. I frequently tried to replicate his bartender juggling moves, performed in the film Cocktail, in an attempt to impress the girls. I always failed miserably!

William Johnston - rugby

Adapting to life with chronic kidney disease

"Then, aged 29 years old, the kidney defect which I was born with caught up with me. I was diagnosed with chronic kidney disease (CKD) and began continuous ambulatory peritoneal dialysis (CAPD) immediately.

"I returned to my native Northern Ireland and after only 6 months on CAPD received a transplant. Unfortunately, this rejected two years later and I had to start dialysis again. I waited, and lived in hope another transplant would be offered. This wait turned out to be 17 years long. This extended time on dialysis meant I was soon considered a ‘career renal patient’, progressing through the whole range of dialysis options – CAPD, APD, then unit-based haemodialysis, home haemodialysis (HHD) and finally nocturnal home haemodialysis.

The disappointment of an old-fashioned renal diet

"One constant remained throughout all this time and the differing dialysis regimes: the renal diet. When I first started dialysis, the renal dietitian presented me with photocopied sheets of renal recipes and lists of the foods I was allowed to eat and the foods I was not allowed to eat. I studied them and presumed she had made a mistake and had mixed me up with a hamster.

"The recipes and foods I was allowed were as appetising and dull as the paper they were printed on (and probably tasted the same). She explained that a renal diet had to be low in potassium, phosphate, protein, salt and taste (I added that last one). Finally she reminded me I was on a fluid restriction of 1 litre a day. That was the day that my passion for food was lost. I no longer attempted to do any real cooking at home and my many pots, pans and kitchen gadgets were banished to the back of the cupboard to gather dust.

"My relationship with renal dietitians during those years on dialysis consisted of either dodging into a doorway if I saw one approaching, or pretending to be asleep if one came into the dialysis unit."

William Johnston - kidney kitchen recipes

Getting my 'cooking mojo' back

"But I am now glad to report that colour and taste have returned to my diet thanks the Kidney Kitchen, created by a collaboration of renal dietitians and top professional chefs, under the stewardship Kidney Care UK's Deborah Duval. The recipes are enticing and I feel confident about trying them knowing that they have been approved by renal dietitians as being safe for me to eat. Every recipe comes with step-by-step instructions and colourful photos.

"Being a kidney patient is not easy. Whenever I'm feeling low, I can now pick a recipe to cook and present to my wife who tells me that I've got my cooking mojo back. She also thinks the recipes are delicious. My tools from my previous hospitality life have been rescued from the back of the cupboard and being utilised as always intended.

Seeing renal dietitians through new eyes

"I now realise how foolish my approach to renal dietitians was. Good dietary advice is so important to maintain the current and future health of dialysis and transplant patients and keep bones, muscles, heart function, blood mineral and hormone levels healthy. Yet when I was on dialysis, the renal dietitians were not provided with resources or tools to stimulate an interest in food or convince patients of the importance of a renal diet.

"I am in training for the next British Transplant Games at which I need to defend my last place in numerous swimming events. Apparently I offer a good imitation of Homer Simpson in tight Speedos. So, for the benefit of all who are attending, I will be consulting my renal dietitian, who I now consider “my friend”, on how best to get fit and into a healthy shape without compromising my kidney health."

Advice from the Kidney Kitchen renal dietitians

Kidney Kitchen is a wonderful resource that kidney (renal) dietitians across the UK have embraced.

It's a daily help, enabling us to translate salt, potassium and phosphate restrictions into practical advice on how versatile, delicious, and satisfying the diet can be.