Jade and Darren's story: living with CKD

Diagnosis and living with kidney disease 

Jade: "I was four when I was diagnosed with kidney disease, but don't remember much other than attending hospital and having multiple tests. At about 11 years old, my kidneys failed, and I went onto peritoneal dialysis (PD). It was difficult being on dialysis as a kid. Hospital, medication, doctor visits, and I had an issue with the catheter so had to switch to haemodialysis (HD) for a while. When I swapped to HD, everyone at school found out about my kidney disease, and when I went back on PD, I was treated very differently. I wouldn't get invited to sleepovers because they didn't think I'd be able to. People would try to help by not giving me certain foods like potatoes because they knew I was on a kidney diet, even though I would ask them to just leave me to it. Every week during summer I'd be stuck on the side, and I wasn't able to take part in swimming activities.

"It wasn't great at all, and I ended up switching schools, at about 13. When I moved, I didn't tell anyone about my kidney disease besides a few kids who became my closest friends. I am still friends with them to this day, we are close knit.

"I then had a kidney transplant at 14 which lasted about nine and a half years. Transplantation was good, and it made my life feel pretty 'normal'. I lived my life as best I could – I was able to go swimming, go to the gym, have a few drinks as I got older. There were a lot of hospital visits, initially, but they got less and less as the years went on. I would do sports such as rounders and hockey – I was able to just get on with a normal life.

"Then, in 2019, my blood pressure started going through the roof and I began losing vision. I was told that my kidney function was dropping and wasn't long until I was back on dialysis at about 23. Honestly, I just kind of accepted my kidney transplant failing. I was young when I had a transplant and it was from a deceased donor, so I just thought I can't complain. I was hoping my kidney would last longer, but I had also known people whose new kidney failed after a few months.

"I decided to do haemodialysis (HD). It hasn't all been easy – I have had issues with my neck line and my fistula – but I was able to make dialysis work around me. Work is really good, and after I explained kidney disease to them, they passed that on to management, so everyone is clued up on it. Usually, I go into the office on Tuesday and Thursday, my non-dialysis days, and I work Monday, Wednesday, and Friday mornings at home and then dialyse in the afternoons."

Meeting Darren, getting married, and Kidney Care UK

In 2020, Jade met her partner, Darren. They both explain what living with kidney disease was like, and why Darren has now chosen to fundraise for Kidney Care UK.

Jade: I met Darren in 2020. I was on haemodialysis so we had to meet when we could during the Covid-19 lockdowns and restrictions.

Darren: I'd try and visit Jade in hospital (she had sepsis for a little while), looking after the cats at her house, along with general maintenance, when she was an inpatient. It was very difficult with work, then the lockdown, then Jade's sepsis. All of that stuff during the lockdown has kind of been forgotten but it was tough, but we managed to pull it off.

We got married this year, in 2024. The wedding was marvellous day, with absolutely breath-taking views of the Lake District in Windermere and perfect weather to complete the picture. To be able socialise with all our close friends and family, in a pleasant and calm environment and with the outstanding beauty of the location, was amazing. We both had a wonderful time together and neither of us could have asked for more."

Jade: "I found out about Kidney Care UK through my dialysis unit a few years ago. I was struggling to make ends meet because I'd lost my job during Covid-19. I had no income, I was waiting on Personal Independence Payment (PIP), Universal Credit (UC) wasn't covering my bills and food. So, I chatted to the nurses at my unit, and I applied for a grant from Kidney Care UK, which was accepted.

"The grant helped me pay off my bills, and I ended up asking for a second grant about 18 months later while looking for a job. I didn't think I was going to the second grant, but they gave it to me, and it helped me so much. After that, I decided that I wanted to donate some money back to the charity, to someone else who needs it. When I got another job and was more financially secure, Darren and I spoke about it, and we decided to fundraise."

Fundraising: engines and bath bombs

Darren: "I've always loved motorsports, and while Covid-19 had knocked out lots of local and grassroots motorsports events, in the last year, 2023 and 2024, there are events coming back.

"I had been absent from the motorsport world for about four years when I decided to get back into racing. I reapplied for my licence at the end of 2023 for the 2024 season, got back into preparation for racing, and started my entry list and entering events. I could only have one charity to support, so after Jade was given the two grants and said she wanted to donate money back to Kidney Care UK, I chose them.

"I filled out the fundraising form on the Kidney Care UK website and explained why I wanted to fundraise. Karen, the Senior Fundraising Officer, helped design and confirm a livery for me with the Kidney Care UK logo and QR code that linked to the Kidney Care UK website.

"Since there's always a large audiences and other spectators in motorsport, I thought it'd be good to try and get those crowds to raise awareness of Kidney Care UK and their support to make a donation. We also have a couple of charity buckets at the races and other options where people can donate online through my Facebook or on the Kidney Care UK's website. It's about making it as easy for people to donate as possible."

Jade: "For us, fundraising is about doing something that stands out, doing something different might pique people's interest. You can reach a different audience that way.

"I want to do a charity fundraising event too – I have my own business making and selling toiletry items such as bath bombs, soaps, and scented candles – so I'm considering perhaps doing something related to that in future."

Darren: "My advice for fundraising is to find something you're talented at as an individual. It is about getting out there and doing something good for others. Try to be different or unique when you're deciding what fundraising event you want to organise or take part in an event supporting Kidney Care UK to raise awareness.

"I'm hoping to try to get more sponsors onboard throughout this season and next year's. Since motorsport only really functions through sponsorship – which means I can compete in different events and generate a larger audience so more people can see the vehicle and the Kidney Care UK livery. It’s all about socialising with people, explaining kidney disease and kidney failure, raising awareness and hopefully donations.

"I want to say thank you to Kidney Care UK for accepting and allowing me to fundraise in such a unique way. I also want to thank “Garstang and Preston Motor Club” for accepting me and supporting me in a number of competition events, and my local car group “Fylde Modified”. There are roughly 2,000 members in the group, who are supporting the charity and raising awareness of the fundraising event. They are a great bunch of people to socialise with and are becoming part of the family in the local car community."