My name is Katie Newell, I’m 37, and I’ve been living with kidney disease since I was a teenager. It all began when I was around 13 or 14, constantly in and out of hospital with relentless urine infections that would often lead to kidney infections. On two occasions I became seriously ill with sepsis. It was a terrifying and confusing time, especially as a young girl just trying to make it through school. I missed a huge amount of my education, including sitting some of my GCSEs, and despite endless hospital stays and medical letters, my school still threatened my parents over my “poor attendance.” Eventually, one of my consultants—who had a sharp sense of humour and a lot of heart—sent a beautifully sarcastic letter back suggesting that if they really wanted me to attend school, they could provide two nurses, a hospital bed, and a doctor in case I became critically ill. That letter, written with both wit and advocacy, finally eased the pressure on my family.
That same consultant was the first specialist I ever saw. I was just a teenager in an adult hospital, but he never treated me like a burden. He had just qualified when he met me, and he always made time to sit with me during my hospital stays, bringing me magazines and offering comfort. His kindness during such a bleak period of my life stayed with me. Eventually, we found out that my kidney problems were likely caused by recurrent infections due to a pelvic ureteric junction obstruction, which had gone undiagnosed for years. Later, it was discovered that I also produce uric acid kidney stones, which are radiolucent and don’t show up on normal scans. It wasn’t until a 24-hour urine collection and further tests that we got to the bottom of it. The delay meant years of unnecessary pain, confusion, and frustration.
Despite all of this, I pushed forward. I was determined to become a nurse—to be the person I wished I’d had more of when I was growing up in hospital. I got into university, started my training, and made it to my second year. Then, everything came crashing down again. I was told I needed major kidney surgery and had to stop my studies. Watching my university friends graduate without me broke my heart. It was a huge setback, not just physically but emotionally. My mental health took a hit—again. I had already been diagnosed with depression at 15, but this was a deeper grief, a mourning for a future I’d worked so hard to build.
More recently, I was diagnosed with Loin Pain Haematuria Syndrome—LPHS—a rare kidney condition that affects around one in a million people. It causes severe, unpredictable pain and hematuria, and is often diagnosed only after every other possibility has been ruled out. My nephrologist, Dr. Christopher Goldsmith, happened to see me in clinic by chance one day, and after talking through my symptoms, he suspected LPHS. After months of testing for everything from TB to autoimmune conditions, he confirmed the diagnosis. There’s no easy treatment—just a major surgery called auto-transplantation, which comes with a lot of risk and no guaranteed success. Instead, he offered to try getting me a medication off-license—Tadalafil, more commonly known as Cialis. He fought to get it approved, and I became the first female patient in the UK to be prescribed it on the NHS. It’s been life-changing.
Day to day, I take a huge number of medications—forty sodium bicarbonate capsules alone every day, spaced out by the hour, plus others for stone prevention, though they haven’t always worked. My eGFR fluctuates depending on how bad my flare-ups are, and I’m currently classed as Stage 3 CKD. I’m not on the transplant list and haven’t needed dialysis yet, but with everything I’ve been through, I know to take things one day at a time.
Living with LPHS and CKD means my life is full of uncertainty. The pain can hit at any time and completely derail my plans. Chronic illness is exhausting—not just physically, but emotionally and mentally too. But through it all, I’ve had the support of my incredible family and a medical team that’s never stopped fighting for me. My nieces and nephew keep me going. On my darkest days, they are the light I need to keep moving forward.
If you’ve just been diagnosed with CKD, my advice is simple: don’t panic. Really—don’t. There are so many people out there living full, happy lives with CKD. It might not always be easy, but you’re not alone. Ask questions, stay informed, and don’t be afraid to advocate for yourself. You deserve care, compassion, and answers.
You can follow my journey and connect with me on Instagram, TikTok, and X at @mizz_scouse and @lifewithlphs. I share the highs and lows in the hope that someone out there might feel a little less alone. This life isn’t always easy, but it’s still mine—and I’m not giving up.
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