Personal stories

Jonathon Hope is Co-Chair of the Transforming Participation in Chronic Kidney Disease Programme.

A Difficult Start

Around 40 years ago, at the age of 12, I began to get initial signs that my kidneys weren’t well.  Four years later at boarding school, my kidneys failed and 147 of the next 365 days were spent away from school and in hospital.

As a nervous and unhappy child, this was a terrifying and utterly devastating experience. I quickly became overwhelmed and despite the often outstanding and deeply compassionate care I received from the NHS, I became convinced that my future was bleak and hence as a child, I learned to endure life, rather than live it.

A prolonged, near-fatal transition to haemodialysis, followed by repeated bouts of peritonitis whilst on the newly introduced CAPD (Continuous Ambulatory Peritoneal Dialysis) treatment, ended with an attempted transplant that failed ‘on the operating table’. The result? As a youngster, I felt at the mercy of events, teetering from one health crisis to the next, with little control over, or optimism towards, my life or my future.

Nowadays

Nowadays, however, I am delighted to say that things are very, very different: I have an outstanding quality of life: I can eat and drink what I want, have plenty of energy, work full time, run a successful complementary therapy company with my wife, contribute to kidney service improvement, travel widely and in short, live life to the full!  I feel healthier than I can ever remember and feel confident and empowered.

So, to what do I attribute this seemingly miraculous transformation – one that as a child, I would have thought inconceivable if not impossible to achieve?  In short, it was down to one remarkable health care professional who saw in me, something I never imagined I had – an ability to take my self-care skills to the max!

What triggered this metamorphosis?

Unbeknown to me, back in late 1994, the tipping point of my renal life was just around the corner! My second transplant failed, triggering an urgent relocation from the Hong Kong branch of a UK bank back to its London head office – and a return to the grey skies of England and the even less attractive prospect of satellite dialysis.

At the time, I was young, disciplined, well-motivated and independent: I worked full time, lived 10 minutes from the hospital and so was keen to do more than just dialyse in a unit. In addition, satellite dialysis felt too ‘passive’ to me, though I didn’t really know whether there was an alternative. Then one day I heard fellow patients talking about something called home dialysis in really positive language – to my young ears, it sounded a little like the Holy Grail I had always searched for! Strangely though, I may have already had kidney failure for around 10 years, but I had never heard of it! I listened and learned more.

Self-care

After a little bit of investigation and a long and hard push for a place on the home dialysis programme, I was thrilled when one day, a sister called Barbara came to see me whilst I was dialysing and offered me a place on the home dialysis programme! That day is as vivid in my mind as yesterday, and looking back on it, it came to be a tipping point in my life. In short, it was the foundation stones of my re-taking control over my day to day life in the face of kidney failure.

Over the almost 10 years on home dialysis, the home dialysis team were brilliant: their support enabled me to empower myself! I voluntarily extended my dialysis hours to 6 hours three times weekly, adopted button holing as a needling technique, dialysed at home on my own and by the end of it, I felt less like a patient and more and more like a normal, healthy person! I felt both liberated and energised as I ate, drank, worked, travelled and lived more than ever before.

Even more importantly, however, were the longer term lessons I learned from home dialysis: home dialysis gave me the confidence to manage dialysis, but also the confidence to explore other self-help approaches to improve my quality of life: in short, I developed a self-help bug!

I discovered a huge range of resources ‘out there’ that could help me dramatically improve my own quality of life. I learned to manage the vast array of symptoms that often accompany dialysis; to my astonishment, I discovered techniques that improved my mental, physical, emotional and spiritual well-being.

In time, all symptoms eased and disappeared and my visits to hospital, A&E and my GP fell dramatically – by around 75%. I regained a quality of life that would literally have been unimaginable to that young teenager who started out on the hard and sometimes utterly overwhelming journey of kidney failure. Thank goodness for the ‘Barbaras’ of the NHS!