Ben’s Story

When were you first diagnosed with kidney disease? 

My condition was diagnosed fairly early. I was 22 when I found out I had IgA Nephropathy, and it was almost 12 years later when I was told that dialysis or a transplant had become inevitable. The aim was always for me to have a pre-emptive transplant, and so the testing process began as soon as my kidney function fell to about 12%. 

As someone who’s spent his entire career in the fitness industry, I was used to being extremely active. It was just as mentally challenging as it was physically as my health deteriorated. I had to reduce my working hours and avoided social situations almost entirely to preserve energy. It was hard to enjoy life when it felt like my entire life was on hold. I’m grateful for the support I had because that was an extremely difficult period of my life. 

How did you find being on the waiting list and trying to find a match? 

How were you feeling on the day of surgery?  

It wasn’t until I was being wheeled to the operating theatre that the enormity of what was happening actually started to sink in. Matt had gone down to theatre a few hours before me, so all my thoughts were with him and how he was getting on.  

Then the nurse said, “it’s your turn now Ben”. I realised it was a defining moment of my life. With my Mum on one side and Matt’s mum (my aunt) on the other, a 5-minute walk to surgery felt like a lifetime. Was this going to be the day when I got my life back? 

The surgery went as well as it could have. We were warned beforehand that it can take a while for the kidney to “wake up”, and that I shouldn’t be alarmed if it didn’t start working straight away. Well, my new kidney was working before they even had me off the operating table! 

I remember waking up in Recovery just as Matt was being taken back to the ward. He managed to give me a thumbs up on his way out. That image will stay with me forever. 

6 months later, I’ve also got my social life back. I’m exercising daily and I’ve enjoyed being able to return to work. They’re the big things, but the smaller benefits are endless too. Things like being able to have a meal out with without stressing over how much salt is in the food. Not having to rely on family members to take me places in case I get too exhausted to make it back on my own. I could name a hundred other things that most people take for granted that you need to keep on top of with kidney disease. 

Don’t get me wrong, the battle is far from over for me. I’m still having weekly blood tests, and with that always brings an element of anxiety. Is the kidney still working? What will my creatinine result be? Is my Tacrolimus level too high? But it’s just part of the process. I accept it, and I’m lucky to be in this position. I wouldn’t change it for the world.  

What would you say to someone considering living kidney donation? 

Just give it some thought. Whether it’s because you have a friend or family member in need, or possibly even to donate altruistically. My cousin Matt has selflessly given me a second chance to pursue my hopes and dreams. I can’t express how grateful I am, and there are no words to describe how incredible that is. You could be a real-life super hero for someone, like he is to me.