“Hi Jack, this is your consultant, sorry to call you so late in the day…”

“No problem! Everything alright?”

“Yeah, just calling regarding your latest test results. Unfortunately, I have some not so good news…”

This call is the start of a conversation my family and I had been expecting for over 25 years now, a call which I know is the start of a future always seemed so far away. Now, it looks highly likely that my life will change again as result of an illness I have had since I was 10 days old.

The reason?

Because I have Chronic Kidney Disease. It is something I don’t talk about, something I’ve learnt to just get on with and accept, something I won’t allow to stop me doing the things I want to do. I consider myself lucky, because although it is something that causes some side-effects and restrictions (gout attacks, fatigue, back pain, no alcohol!), it is something that is not visually obvious. There is no cure, and one day in my future, my kidneys will fail as a result of my illness.

So I thought, on World Kidney Day, it was prime time to finally start talking about it…

When I was just 10 days old, I went into renal failure and it was touch and go as to whether I would survive. I was operated on and my renal system was restored, albeit in a massively deteriorated state. My parents and I virtually lived in hospital for a number of years, and despite many more hairy moments over this time, my condition eventually stabilised; with the help of medication, catheterisation, my consultants, and all of the support and love my family gave me, I grew up and went to school relatively unaffected by my illness. Frankly, I didn’t know any better so it was a case of just getting on with it.

As I got older and (slightly!) more mature, I began to understand the impact of my illness. Kidney function is measured by calculating GFR (glomerular filtration rate), which is a measure of how much blood is ‘cleaned’ by the kidneys in one minute, against the ACR (Albumin:Creatinine ratio), which is the amount of protein leakage in the urine. These two numbers then give a ‘G stage’, a measurement which indicates the level at which a person’s kidney function is at (please see the graph in the gallery part on this page).

A normal average person in the UK will have a kidney function of over 90% and an ACR at normal levels. Mine, throughout my late teens and early twenties, had come down and then stabilised around 36 GFR at A3 ACR by the time I turned 25. Although classified in Stage ‘G3b’, with moderate to severe loss of kidney function which on average was dropping 0.5% every year, my consultant and I were happy that with limited intervention I could continue living a normal life. There was a countdown clock ticking down in my head to a day when my kidneys would enter End-Stage Kidney Disease, but that day was way off into my future…

This changed very recently when I got the call referred to at the start of this blog.

Because now, my consultant was telling me that my kidney function had dropped 10% in just over 12 months; the latest test results showed my GFR was 26 and my ACR in A3, putting me in ‘G4’. My illness was now classified as End-Stage Kidney Disease, a term which terrified me. I was told there was no obvious reason for this sudden drop (my BMI was better, I was exercising more and eating healthier) other than it looked like my kidneys were starting to fail. It was now time to start talking about planning for the next stage of my life, which always looked so far away - adapting to a life on dialysis and waiting for a transplant donor. The countdown clock display in my head suddenly got a whole lot shorter…

It was tough to hear. I knew it could be worse - damn, it could be I had entered kidney failure and I had no time at all to adapt. I also knew nothing really changed in terms of my life right now, and I had support from my family, my friends and my work. But even so, you start thinking all sorts of things - what does this mean, how will it affect me and my family, how to deal with it and worst of all - how long have I got? 

Time passed and I started to resort back to my original ways of thinking - the ‘suck it up and get on with it’ approach. It worked in the past, so I must make it work now. Then I saw a Facebook ad, one I would normally scroll pass on the way to looking at more interesting things like cats playing the piano or one of my Facebook friends posting pics of their family walk in the park…This ad referred to the #850challenge, a fundraising challenge set by Kidney Research UK for World Kidney Day 2021. 

There are 850 million people worldwide who live with some form of kidney disease and this challenge was to help these people - by walking, running, cycling 850 miles throughout 2021, completing 8500 steps a day in March, raising £85/£850 - all in the hope of raising more funds and awareness to help end kidney disease. Suddenly, I saw an opportunity - I did some quick planning, called a few people, told them my ideas, got told I was crazy, but then the idea solidified. I wanted to do something, to help others in my situation now and in the future, to raise awareness and hope. Of course, there is the selfish point of view as well; I want to do this for myself, to show that my illness doesn’t define me and to prove it won’t hold me back.

Therefore, in August 2021, I will attempt to cycle 850 miles (in a roundabout way) from Edinburgh to London in just two weeks, all in the hope of raising a minimum of £850 for Kidney Research UK. It is going to be my #850challenge, and it’s going to be bloody tough to say the least.

I am asking for your support in any way you can provide, and I pledge to keep you in the loop with my training and eventually with how the event goes. A new countdown clock has started in my head, towards the day I set off from Edinburgh on a journey I can’t even comprehend the difficulty of.

Thank you for taking the time to read my story, and a MASSIVE thank you if you chose to donate. Every penny matters; kidney disease ends here.