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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%. 

How was your daily life like before you received a kidney?  

What life? 

One of the biggest challenges I faced daily was dealing with constant fatigue. No matter how much I rested or how many hours of sleep I had, I was in a constant state of exhaustion. Towards the later stages of kidney failure, I can’t remember a day where I made it past lunchtime without needing to have a nap. It was such a strange feeling – I describe it as like walking through mud with heavy boots on. I didn’t feel ill, but even simple tasks were a real struggle and drain on my energy. 

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? 

I’m one of the lucky ones because I had a number of family members and friends come forward as potential donors. I’ve heard so many stories about how so many people don’t have a single person. It would have been devastating to be in that position. 

Some months later, my cousin and uncle were confirmed as the most suitable matches. Matt, my younger cousin and best friend, was the preferred choice due to his age and better physical health. The lead-up process was completed just in time, and the transplant took place just a month or two before I would have needed to start dialysis.  

I’ll never forget the day when Matt called me and asked, “what are you doing on 13th October?”. I said I had nothing planned. He said, “good, because we’ve got to be in Coventry for the op!” 

It was a few moments later when we realised it happened to be Friday 13th! Lucky for some, I guess. 

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. 

What impact has your kidney donation had on your life? 

I felt an improvement as soon as the first morning. I had a clear headedness that I hadn’t felt for as long as I could remember. Even my skin improved noticeably, and my eyes were much brighter. My kidney disease has progressed quite slowly, so I hadn’t noticed just how ill I had become. 

Since then, the impact has been huge. As I’m writing this, I’m preparing for my first trip abroad for over 3 years. It’s not that I wasn’t allowed to travel before my transplant, but I just had no drive to do so. I didn’t have the energy to enjoy myself and do the things that I’d want to do. Plus, the restrictions on what I could and couldn’t eat would have spoiled it anyway. 

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. 

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