My son John Paul was born with kidney failure. They noticed an issue with his kidneys during the 20-week scan, so the professionals were able to prepare as best they could. We had weekly scans to check his development, and a plan was made to deliver him early to give him the best chance of survival.
Before this we’d had no experience of kidney disease at all – we hardly even knew what the kidneys did! But we were referred to a specialist who was brilliant at explaining everything to us and talking through John Paul’s condition as he grew. He explained to us what the kidneys do, the medication he’d need, what dialysis was and how John Paul would need it to survive, and the possibility of a kidney transplant. It was all so much to take in, but they were great at being there for us and encouraging us to ask any questions we had.
In the end, John Paul decided to come on his own even earlier than the planned early delivery! He was born at 00:07am. We then had him to ourselves until 9am, when he was transferred to the local children’s hospital and was taken straight to theatre to unblock an obstruction that was stopping him from peeing.
For the next year they tried him on different medications to stimulate his kidneys and help them grow, but they never started fully working for him. By the time he was three months old we knew he’d need a kidney transplant, but sadly he wouldn’t get one for several years.
He was treated on dialysis for two years. We decided we wanted to treat him at home, which involved a lot of training and equipment being set up at our house. It was incredibly daunting, being in charge of all this tech that was needed to be used six hours at a time just to keep him alive. It meant weren’t able to do family things. His mum and I could never go out for a couple’s night as one of us would always have to be with him in the evenings. Even on those rare times when we could go out, our minds were always on him and his health. It was a really challenging few years for us.
He was on the kidney transplant list the whole time, but sadly there just aren’t enough kidneys from deceased donors to go round. Eventually the specialist told us about the possibility of a living kidney donation. We both immediately put our names forward and began testing to see if our kidneys were a match for him. After a while I got the call to say my blood and tissue type were a perfect match!
The whole testing and work up process to donate took around seven months. I was self-employed so I could cancel work as needed and work around the appointments. I was able to take any last-minute openings if someone didn’t show up or if things were moved about, which helped speed everything up a bit. In the end the tests showed I was healthy enough to donate, and a date for the transplant was set.
By the time we got to the operation, John Paul was at the point where he was hooked up to the dialysis machine 22 hours a day. He was constantly lethargic and tired. He’d come off dialysis, and soon enough he’d be lying on the coach with no energy.
It was so hard on him, but we got on with it because it was all we could do.
The operation itself went absolutely fine, though the initial recovery was pretty hard on my body. The transplant took place on Wednesday morning, and I wasn’t able to get up and see John Paul until Sunday.
When I did see him, he was like a different boy. He was full of life! His skin had actual colour instead of being pale white. It was one of the happiest moments of my life. I remember thinking – if I had a third kidney I could give someone, I’d give it immediately.
We’re now over 11 years on from his transplant. It’s been a life full of ups and downs, but since the transplant his kidneys have never had any more trouble. He sadly still has other health issues, but generally he lives a completely normal life.
My own recovery took longer than I had expected. I was in pain for around 16 weeks in total and found it hard to get walking again. I went back to the surgeons in case anything was wrong, but they explained they weren’t surprised and told me to keep resting. It helped to know I was on the right track, but still took time to fully recover. Since that initial recovery period, though, I live a perfectly normal life. I feel no difference in myself whatsoever. The transplant has had no effect on my day-to-day.
Recently we’ve started going to the British Transplant Games. This year he got into the semi-final in tennis and came 5th in table tennis. It was fantastic to be in a place where his kidney transplant was seen as completely normal. As parents, we are there for our kids in their worst moments, but at the Games I got the opportunity to see him at his best.
It also gave us the opportunity to meet other people. We got talking to a family who had a similar issue to one we had back in the day with moving someone out of bed when they needed dialysis. The Games gave us a place to chat about how we overcame those problems and share our ideas with each other.
John Paul’s 15 now. He’s still going from strength to strength, but he’ll probably need two more kidneys in his lifetime. Sadly his mum passed away a few years ago, and when the time comes that he needs a new kidney we’ll need to rely on the kindness of others. We’ve already started planning and know so much more about the process this time, but there’s a lot to think about.
I’d definitely encourage everyone to consider if they could donate a kidney. Even if they were willing to donate but didn’t know anyone in need, it’s possible to donate to a stranger through the UK Living Kidney Sharing Scheme and change the life of someone out there.
John Paul’s kidney transplant changed his life. Before, he couldn’t go out anywhere overnight. He couldn’t go to his granny’s, he couldn’t travel far from home. Since the transplant we’ve been on holiday together, we went on a cruise, we’ve been able to do things we could only have dreamt of while he was on dialysis. The old John Paul wouldn’t have been able to walk 50 metres, and now here he is competing in the British Transplant Games!
I’ve recently started retraining to be a paramedic after seeing the difference the NHS can make to someone’s life. I’ll never stop wanting to give more back. Who knows, one day I could even attend another child with kidney failure.
