Diagnosis

Carla: "In 2019, I'd been feeling tired and under the weather and developed an intolerance to alcohol, so I went to my GP, who took some bloods. They never got back to me, so I didn't think anything of it. But by October, I was absolutely shattered all the time and had bowel issues, too.

"The kidney consultant sat me down and told me my kidney function was 14% and that I was in end-stage kidney failure. It turns out that in March, I was at stage 4 kidney disease, so in those seven months my function had dropped considerably. The consultant told me I would probably need dialysis, or a transplant, and the sooner I was on the transplant list, the better. It was overwhelming, and I think I went into autopilot mode."

Lynsey: "We went to visit her in October 2019. I knew she'd been to see the doctor in March. We were both working full time and had young families, so as a busy mum, you're always tired, but I just knew she wasn't right, so I pushed her to go back to the doctor.”

Calra: "I was diagnosed with monoclonal gammopathy of renal significance (MGRS) myeloma, a type of cancer. Because MGRS is rare, many additional tests were needed to identify exactly what was causing the damage and what treatment would be most appropriate."

Lynsey: "Carla's diagnosis was pretty bad, but it was made more complicated because of both the cancer and kidney disease. There were quite a few moments in the journey where the thought of her not being there was the worst feeling.

"Thankfully, there was treatment available, and she remained characteristically practical and strong through it all. She had hard days though, of course, but she was always honest with me."

Haemodialysis and chemotherapy

Carla: "I started haemodialysis (HD) in late 2020. Honestly, I found it incredibly difficult from the very beginning. Because of other health issues, peritoneal dialysis (PD) wasn't the right option for me and my first fistula failed and I needed an AV graft instead, both of which created a delay.

"I remember arriving for my very first dialysis session absolutely terrified. The unit was busy and everyone seemed occupied until one nurse came over to insert my needles. The reality of what was happening suddenly hit me and I burst into tears. The nurse was kind, but it was obvious to me that she had seen it all before. I felt really sorry for myself and all the other dialysis patients who had ever gone before me.

"It was an incredibly challenging time. My chemotherapy took place at Singleton Hospital, while all my dialysis and kidney care happened at Morriston Hospital, so life became a constant cycle of hospital appointments. I spent the next year weak from chemotherapy and my declining kidneys.

"The chemotherapy and other drugs required were affecting my kidney function and my dialysis access was unreliable. My AV graft clotted several times, requiring emergency admissions and treatment to dissolve the clot.

"The third time it happened was probably the lowest point of my whole journey. By then I'd been training to carry out my own dialysis and had become confident with self-needling. When I couldn't get blood flow that day, I knew something was wrong. Hearing the words, 'It's clotted again,' completely broke me.

"I was due to go and see Lynsey in Cornwall and had booked dialysis in a unit nearby, but I was admitted into hospital instead. It was too much for any person to take and I felt like giving up and going home.

"That evening, one of the vascular access nurses stayed long after her shift had ended. She listened, reassured me and simply sat with me when I needed someone most. Before leaving, she made me promise I'd still be there the next morning because she was coming back to see me. Her kindness carried me through one of the darkest days of my life."

Living kidney donation and transplantation

Carla: "My sister Lynsey had offered me one of her kidneys almost from the moment I became ill. Long before I was eligible for transplant, she would simply say, 'You can have mine.'

"However, I first had to complete chemotherapy, undergo a stem cell transplant, and then wait a full year while I received all my childhood vaccinations again before I could even be considered for transplantation. We had to wait until February 2023 before we could work up to a kidney transplant. I don't know how I got through that year. Kidney disease is utterly relentless.

"As soon as I became eligible, Lynsey contacted my consultant to begin the donor assessment. Although I felt incredibly grateful, I also struggled with the idea of someone I loved undergoing major surgery for me. What helped was something Lynsey said: she wasn't just doing it for me. She wanted her sons to have their auntie, my daughters to have their mum, and for us to have many more years together as sisters.

"Her calm confidence never wavered throughout the entire process, and eventually I learned to accept what truly was the greatest gift anyone could give."

Lynsey: "We've always been super close, and when we found out about the kidney disease, I told her she could always have one of mine. People ask me how it felt, making the decision. For me, it was never a decision, it was always what I was going to do – I didn't have to think about it. I took it seriously, talked to my family and had their full support. Carla worried about me, putting myself through it, but I reminded her that she would do exactly the same for me."

Carla: "My kidney transplant took place on 21 June 2023, Midsummer's Day, a date that has always been special to me. It felt auspicious, like a hopeful, meaningful day to begin a new chapter. I was worried something might happen to delay it, but we were lucky and midsummer remains a magical day, with an additional celebration going forward.

"The day before surgery, my sister and I had an online Reiki session together. When we arrived at the hospital, we'd both unknowingly chosen to wear floral tops and it felt like another sign of connection. We joked with the nurses and managed to sneak out into the hospital grounds for one last walk together. We sat amongst the trees, breathing in the fresh air, feeling peaceful and quietly hopeful about what lay ahead. Looking back, it was a beautiful moment of connection before both of our lives changed forever."

"When I woke up from the operation, still groggy, I just knew it had worked. It was like the fog had lifted. I felt like my life was in high definition again.  I started doing yoga again, and all the other things I loved. These days, my kidney function is a solid 64%.

"Three years later, I feel amazing. I work part-time for the Stroke Association in a role I love. I am so grateful for the treatment, compassion and care I received. As for my sister, I don't even know where to begin with how grateful I am to her."

Lynsey: "On transplant day, I felt very calm and knew it would all go to plan. They wheeled me across to see Carla after the operation and it was brilliant to see her looking well.

"Post transplant I have been absolutely fine. Following the initial period of recovery everything healed well, and I have suffered no discomfort since the operation. Life three years on is great, I am so proud to see how well Carla is doing and the adventures we are able to have as a family because of the transplant."

Self-discovery and life after transplant

Carla: "I've always been fit and active, so this illness changed my life so much. Kidney disease affected my whole family. Although I've been through hell and had some really tough times, I don't know if I would change anything. As awful as it's been, it's taken me on a journey of self-discovery and building resilience, helping me to prioritise the important things in my life. I'm a different person – kinder, more empathic, more compassionate."

Lynsey: "If anybody is considering being a living donor, please go for it. The impact you can have on someone else's life is unbelievable. Because of living donation, I have my sister back."

This story was first featured in Kidney Matters issue 32.