Ben felt drained by kidney disease for over 12 years before his cousin gave him a second chance at life by donating his kidney.
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%.
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.
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.
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.
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.
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.
Henry donated a kidney to his sister Helen, and has seen first-hand the difference a donation can make for someone with kidney disease.
Read“It has made absolutely no difference to my day-to-day life. My mum, however, has a life like never before.”
ReadNaomi knew she wanted to donate a kidney after learning about kidney disease and reality of life on dialysis.
ReadEmma donated her kidney to a stranger eight years ago after first seeing a story about non-directed donation on TV four years previously.
ReadJoyce thought that she was too old to donate a kidney, before learning there was no upper age limit for donating.
ReadMandy donated one of her kidneys to her younger cousin Lou, who was diagnosed with kidney problems when she was two years old.
Read"I don’t consider myself to be a hero or brave. I just did what I was brought up to do – to help others."
ReadJulie worked hard to stay fit and healthy while she was preparing to donate a kidney to her nephew.
Read"At the beginning it seemed like a difficult decision to make, but since the operation I don’t have any regrets."
ReadTessa believes that donating a kidney to a stranger is one of the best decisions she's ever made.
ReadLynn was 75 when she donated a kidney altruistically. "I knew I wanted to do it if I was capable of doing so."
Read“You don’t need to be a superhero, you don’t need to be a mega star of any sort. It’s something that normal people just like me can do."
ReadLaura knew she would donate a kidney to her sister if she needed it. When the time came, she found the process absolutely worth it.
ReadMatt's dream of joining the police was shattered by an unexpected diagnosis of kidney disease, but his mother's kidney donation allowed him to thrive and pursue new dreams.
Read"I've learnt a lot about myself and my own health – I would do it again in a heartbeat (if I had another kidney to spare!)"
Read"I believe that if you are in a position to help someone else less fortunate than yourself, then you should do so."
ReadEvery kidneyversary deserves a celebration, but in 2024 Elaine marked a particularly poignant milestone – 10 years since she donated a kidney to her eldest daughter.
Read"I feel immeasurably better in myself knowing I have been able to give my brother the gift of a healthy life."
ReadDennis is keen to show people that you can still live your life as normal and achieve great things after donating a kidney.
ReadWhen Ali heard that a former colleague was waiting for a kidney transplant, he knew within minutes that he would offer one of his.
Read"My mum needed a kidney, and I didn’t need both of mine. When I heard that, I didn't have any hesitation."
ReadKathryn faced life-changing kidney failure after being diagnosed with the rare disease, IgA vasculitis.
ReadMarianne has seen first hand the benefits that kidney donation can bring to a family, and feels blessed that she was able to donate a kidney to her brother.
ReadJulie donated to her son and knows first hand that donating an organ doesn’t just save a person. It saves a family.
ReadAnne donated into the UK Living Kidney Sharing Scheme so that her brother could receive a kidney transplant.
Read"Within both the Jain and Hindu faiths benevolence to others is supposed to be a key principle. What could be a greater act of benevolence than transforming someone’s life by giving them part of yourself?"
Read"If I had more Kidneys to give, I'd be donating to anyone who needed one."
ReadTrainee teacher Mark is grateful for the life-saving kidney transplant from his brother that put him back on track for life and his career.
ReadSheldon & Hayley watched their daughter Daisy-May go from a shock diagnosis of kidney failure to dialysis, then transplant, in an emotional rollercoaster lasting 16 months.
ReadMy donor gave me a life to live for. I have done things I had never considered doing whilst on dialysis.
Read"If I had another kidney to spare, I would donate in a heartbeat. It was life changing for my husband, and for me as a person."
ReadDavid is just an average Joe. A motorcycling, 54-year-old father and grandfather. And 6 years ago, he donated one of his kidneys to someone who needed it more than he did.
Read40 years ago, Kathleen donated one of her kidneys to Cheryl, who was just five years old at the time.
Read"Giving a small part of me that I didn’t need to someone else would make little difference in my life, but a huge difference in theirs – it was an easy decision for me to make."
ReadLiz's family struggled at first with her determination to donate her kidney to someone unrelated to her.
Read"I donated a kidney to my dad 10 years ago, aged 25. To me, it was a no brainer."
ReadSarah had seen the life-changing difference donating a kidney could have, and immediately knew it was something she wanted to do.
ReadI would not feel as comfortable in my own skin as I do now if I had not donated my kidney.
ReadPete’s kidney gave me my life back and gave my son Edward a mum with energy and vitality.
ReadWhether you’ve already decided to donate a kidney, or you are interested in finding out more about the process and what it involves, we’re here to answer any questions you might have.
