My kidney disease diagnosis
"I was born with one working kidney and when I was about six months old, I was diagnosed with kidney disease. The years as a child at Great Ormond Street Hospital were good, but I remember when I transitioned to adult hospital, the language changed. My kidney condition went from 'good' to 'fairly stable' and when I was about 19, my medical team said my kidney was failing, and there were two options: dialysis and transplant.
"The next visit to the hospital I was put on continuous ambulatory peritoneal dialysis (CAPD), and I was on dialysis until my transplant in 1993. I couldn't tell you what I did last week, but there are things about the dialysis and transplant journey I remember as if they happened yesterday.
"A fortunate sequence of events put me in the right place, at the right time, to have my first kidney transplant. When the hospital rang, I was off work, Mum was on leave, and Dad was working nights, so all three of us happened to be at home. All hell broke loose and within about five hours I was going to theatre. That first transplant lasted 23 and a half years, until 2017."
Failing transplant and losing a kidney
"Around 2014, my creatinine went up a little and I was told my transplanted kidney was on the way out. I never thought it would get 20 years, so while part of me was disappointed the kidney was failing, another part thought I'd done alright.
"I started to get excruciating headaches and I couldn't see properly, so I went for an eye test. I credit the optician with saving my life. She made a referral to see a specialist who explained that my headaches were from having such a high blood pressure (it was 260/180). I was taken to hospital and told my transplant had fallen off a cliff.
"I went onto haemodialysis and at the time I thought I could cope and that I didn’t need a transplant. I'd see my godson, Eddie, and he’d ask to play in the garden. He is a shining light in my life, and I loved running around and playing with him, though as the years ticked by, I wasn't able to. But I still didn't want another transplant.
"The best way I can describe losing my first transplant was that it was like a bereavement. I thought I'd have time to prepare, but the way it hit me made me make a lot of wrong decisions. The more I was told a transplant would be good, the more I resisted it. I didn’t want another kidney, I was adamant. The turning point was Eddie's sports day."
Tony at Eddie's sports day and after kidney transplant surgery.
Re-joining the transplant list
"At that sports day, they had 'dads and uncles' race and Eddie persuaded me to run. Eddie’s mum videoed me and after the race she showed me the video. During the video, she had taken a picture of Eddie. He had a look of joy on his face as he watched me huffing and puffing like a steam train.
"All the advice people had given me about a second transplant, all the conversations, I'd ignored it all until then. That picture was the moment it changed. I thought, 'You've run that race for Eddie, look how happy you’ve made him. You need to have a transplant because if you don't, you can’t guarantee how many days you'll have like that again.' I had tears in my eyes.
"That night, when I went to dialysis, the nurses were amazing. They asked how sports day was. I showed them the photo of Eddie and told them I needed to have a transplant, for no one else but him. I asked them to put things in place to add me to the waiting list. One of the nurses hugged me and said that she didn’t know how happy she was to hear that.
"Joining the transplant list wasn't plain sailing. I needed a parathyroidectomy because my parathyroid hormone levels were far too high, but there was a huge backlog for surgery because of Covid-19. As time passed, I got despondent. I started thinking that if only I'd gone on the list earlier, I wouldn't have had this problem. I was beating myself up thinking I had done this to myself.
"Eventually, I joined the transplant list in March 2023 and then I got Covid-19 two weeks later. I thought perhaps it was just not meant to be. But it was – they put me back on the list when I was well enough, and the next day I just happened to check my phone to three missed calls... I rang back, and I was told there was a kidney ready for me. I had come from a live donor.
"I'd heard about live donors, but I had thought only family members and friends donated their kidneys. I never thought I'd be the recipient of a kidney from an altruistic donor. I don't know anything about this superhero other than the fact that he is a healthy young male. I constantly wonder what would have made him decide to donate a kidney to a stranger – whether he experienced kidney disease himself or had seen what dialysis and kidney failure does to someone.
"The donor hadn't been a match with anyone in his area, so they went to the adjoining area and matched with me! I think, what if they had gone south, or north, to find someone? I had spent all this time wondering whether I should try to get another kidney transplant, then the day after I went back on the list, I got the call. I thought it is meant to be.
"I remember in the recovery room after the transplant, they lifted a bag full of urine and I’d passed 500ml already after an hour. The new kidney had started working immediately after it was plumbed in. The surgeon told me it was a fabulous 'Usain Bolt' of a kidney, and I went home with a kidney function at 80%."
Tony's kidney charm, that he wears as a reminder of his transplant and donor
Feeling well and looking to the future
"Since my second transplant, I’ve noticed how well I feel and how much energy I have got. It has done wonders for my mental health, too. I look in the mirror and I look healthy. I binned the baggy clothes I associated with dialysis and replaced them with brighter colours, different styles.
"My friends say I’ve never sounded so positive. I got very depressed on dialysis. I didn’t see a future; I was in a dark place. But now, when I’m walking, my head is up, not staring at the pavement. I’ve got more to look forward to, and I firmly believe my best years are ahead of me.
"Recently, I completed a 12-mile walk and I was not out of breath or exhausted at the end, and I didn’t even feel any after-effects the following day. It was testament to just how this transplant has completely transformed my wellbeing. I reached the 10-mile point in Jeans Way, and I had planned to call it a day there, but my dear mum who passed away in 2020 was named Jean and seeing her name gave me another burst of energy and determination to walk the remaining two miles and finish.
"I've seen a lot of people on social media who have a similar experience to mine – they’re scared of the future, the second transplant. That was me. My first kidney lasted 23.5 years, and I definitely thought I couldn't be that lucky second time around. I couldn’t handle having another transplant and it not going well. I was trying to protect myself, even though my health was deteriorating.
"I've promised Debbie, Eddie’s mum, that I’ll make the most of my new kidney. I want to give more to Eddie, running around, playing. A few weeks ago, he had a huge water gun and I nicked it from him and was chasing after him. He turned around and realised I was catching him up! That was the moment, when I went back inside soaking wet and I realised, yeah, I can do this now. I really do feel that I have a new lease on life.
"I feel absolutely amazing and not a day goes past – I mean this from the bottom of my heart – that I don’t think of the amazing young man who has given me this chance. That stranger has offered me an opportunity that I thought I’d never get. I have so much love and admiration for this man who I have never met. There are people that are real life superheroes, and that young man is one of them. Thanks to him, I am able to give the best version of myself to Eddie."
Tony's story was also featured in the Spring 2019 issue of Kidney Matters magazine.
