My name is Sarah Eke, and I’m living with Stage 5 Chronic Kidney Disease. I never expected my life to take this turn. It all started when I was rushed to hospital after struggling to breathe. That’s when I found out my kidneys were only working at 2%. I was in complete shock. I was frightened. Anxious. I had no idea what this would mean for my future.
I’d been feeling unwell for a few weeks, but I thought it was just stress or maybe fatigue. Then bruises started appearing on my legs, and I went for a blood test. That weekend, I called 111, and they told me to get to A&E immediately. I ended up in a specialist renal unit, where they confirmed I was in kidney failure. I can’t even explain the fear. I’ve always suffered from health anxiety, so just being in hospital was terrifying. At the time, it felt like everything was falling apart. I honestly thought I might not make it.
There wasn’t any time to adjust. Within hours, I had to make life-changing decisions about dialysis. I had to choose where to have my access point, and I was still trying to process what was happening. It all felt so fast, so overwhelming.
Since then, CKD has changed almost every part of my life. I can’t work in the same way I used to, because I’m not allowed to handle patient-identifiable information during my dialysis treatments. My weeks are now shaped around those dialysis sessions—three times a week, three and a half hours each. Socially, things have changed too. I can’t just go out and order what I like anymore. I have to think about potassium, phosphate, sodium. Even choosing a restaurant is more complicated than it used to be.
Physically, it’s exhausting. I feel the cold more than others, and I get tired much faster. Fluid build-up has changed how I look, and that’s been hard to come to terms with too. But it’s not just the physical side—it’s the emotional impact. Some days I look in the mirror and think, “This is my life now. This is forever.” CKD isn’t something that gets better. It’s something I manage every day.
Right now, I’m in the process of being assessed for the transplant list. My family have offered to be tested as live donors, and I’m so grateful. It’s a long journey, and nothing is certain, but I’m learning to take each day as it comes. I’m trying not to let this condition define me.
What helps me the most is talking to people who get it—people who truly understand. I’ve learned to give myself permission to feel it all. There are good days and bad days, but the good ones are worth holding onto. One of the nurses once said to me, “Your condition doesn’t control you—you’re still in control.” I hold onto that. I focus on what I can still do. That mindset is what keeps me going.
If you’re newly diagnosed or struggling, my advice is this: talk, cry, shout if you need to—but don’t go through it alone. This disease changes everything, but you’re still you. And there’s always a way forward, even if it’s one small step at a time.
