My experiences of CKD

"I met James, my husband, 15 years ago when I was 22. We went to the same primary school and lived close together, two roads away. He was a lad, he enjoyed going out, being a boy – he was a bit of a DJ and had a love for music. He was into sports like me, that's how we got together. At the time I didn't realise, but he had kidney failure, and he was being prepped for dialysis. His renal difficulties came from type 1 diabetes.

"James had a simultaneous pancreas-kidney (SPK) transplant in July 2011. James got the call in the middle of the night, but I had my phone on silent! I was living with my parents, so James and his parents came round and got me up and I realised I had 10 missed calls! The transplant went well, and James was all right until early 2024 when he started to get breathless and was diagnosed with a rare type of cancer called Burkitt lymphoma."

"It is frustrating because James's transplanted kidney and pancreas are still functioning really well. His eGFR is currently in the high 70s. Since the diagnosis we have tried various rounds of chemotherapy which didn't work, but after months of having no positive news and trying a new drug, we found out James was in remission in April 2025.

"We have two little girls who are five and seven and it is a blessing we have our daughters because I know lots of people with CKD struggle with infertility. My biggest worry is the impact of James's illnesses on the girls. They are doing amazing, and we want to protect them as much as we can. They just know their dad has a poorly tummy.

"Working for Kidney Care UK, I've been able to reach out to other people who have so much knowledge about chronic kidney disease (CKD). Having colleagues who understand me and who can offer support and advice is so good. It means so much to me, being able to talk to other employees who are knowledgeable."

My role at Kidney Care UK

"I am the Support Line Leader, and our Support Line is the first point of contact for patients, loved ones and healthcare professionals who have questions about living with kidney disease. We are here to give guidance or advice straight away. Some people call and they just need to talk to someone. People often don't want to worry family members, so we offer a listening ear, support from early diagnosis through to renal replacement therapy. We are there at any point, at any time.

"I'm always happy to share my experiences when I get a call and when I do, I often hear a kind of sigh of relief that the person calling knows I 'get it'. I know how difficult kidney disease is for people and I can really empathise and share my experiences.

"I started as a Patient Support & Advocacy Officer (PSAO) around three and a half years ago, which was the perfect opportunity for me as I have always worked with people living with disabilities and ill health. I was a PSAO for over two years, and when the Support Line Leader role came up, I enjoyed the opportunity to help the charity develop a new service.

"I always find with CKD that everyone's journey is so different. On a personal level, I hate uncertainty. With kidney disease, it's the uncertainty that I struggle with too – one person can be stable on 10 eGFR and someone else can deteriorate really quickly. It's never straightforward.

"Patients can feel out of control with CKD, so if I can empower them to take control of anything from diet to a choosing a different treatment, it is special. It's great to make an impact after a conversation and we get lovely feedback, people saying they can see the light at the end of a tunnel. It feels like I really make a difference and it is a bit of a buzz when the phone is ringing because anyone could be calling! I feel very fortunate to do what I do."

You can call our FREE Support Line on 0808 801 00 00 (Monday to Friday, 9am to 5pm) or you can email us at [email protected]