Being diagnosed with CKD can have a big impact on your life, whether that is relief that you have an official diagnosis, or worry about what is coming next.
In fact, our recent Bloody Amazing Kidneys campaign was launched to raise awareness of CKD and to ensure more people are identified as having CKD sooner.
For many people, their CKD diagnosis often comes as a surprise or a shock and this was the case Nikki, Tony, Janet, Izzy and Angela.
We spoke with them about their diagnosis experiences and discussed what they would have liked to have been done differently.
Nikki was diagnosed with FSGS and nephrotic syndrome as a teenager and now receives home haemodialysis (HHD)
"I first went to the GP with swollen ankles, but I was told the issue was just my age. After I passed out at a new job, I went back and, after blood tests, was told I might be anaemic. My legs continued to swell, and after more back and forth – and gaining half a stone in three days – I was eventually told I might have nephrotic syndrome.
"I went to an adult hospital ward, where a consultant said I must have been lying when sharing details of liquids I'd drunk because I was gaining so much fluid. I ended up collapsing on the ward and was moved to a new hospital. I remember being sat in an ambulance on my own because my mum was at work, which was terrifying. I saw a lovely new consultant and three weeks later I was diagnosed with nephrotic syndrome and FSGS.
"Since my diagnosis, I have always been proactive. I want to learn as much as possible. Knowledge of dialysis elsewhere in the medical profession can be shocking. My GPs have always been good, I've been lucky, but even now I try to share my knowledge of kidney disease with my GP every time I go to the surgery.
"Few people understand the impact of CKD. When you're tired, it is a complete and utter exhaustion, you can hardly sleep. I have a number of comorbidities due to dialysis, but I go to the gym, walk my dog, and try to keep as healthy as possible. It infuriates me that kidney patients don't seem to matter to the government – I predict my kidney disease has cost around £3 million to the NHS over my life, based on dialysing for 34 years."
Tony was diagnosed with kidney disease while he was in college, after falling ill and being sent to hospital. He was living with high blood pressure which was disregarded until his diagnosis
"Around January 2017 I started feeling like something wasn't right. At that point I knew I had a blood pressure issue but every time I went to my GP to have it checked it was brushed off as 'white coat' syndrome. I was in sync with my body, playing college rugby, going to the gym. I probably went to the GP 10 times over a year before I was put on any blood pressure medication.
"I ended up in hospital because I got so unwell so quickly and after blood tests the doctors said they were certain that kidneys were failing. I was transferred to a kidney unit and after more tests I was diagnosed with stage 4 CKD, with a kidney function of around 40%. A few months later, my CKD went to stage 5.
"I did peritoneal dialysis (PD) for around two years and then haemodialysis (HD) and home HD until I had my kidney transplant in August 2023. Since my transplant I've run, cycled, swum. In 2024 I went to the British Transplant Games and was awarded a bronze medal. I've been nicknamed “The Iron Kidney”!
"I think GPs need to start to listen to patients. If I had been listened to, I might have been able to handle my blood pressure better. I would have had a heads up that my kidneys might be affected by my blood pressure, and I would have had time to change to help prevent CKD. But I was brushed off, and that is part of the reason I've had these experiences."
Janet was diagnosed with a kidney cyst in 2008 and had surgery in 2009 which included a kidney being removed. After an annual follow-up appointment in 2023, Janet was told that her remaining kidney wasn't functioning well, and she was diagnosed with CKD
"My kidney disease diagnosis came as a real shock. It was in late 2023, just after a blood test, that I was contacted by the GP who let me know a that my remaining kidney wasn't functioning well. I did a repeat blood test in early 2024 and that was when CKD was first been mentioned to me by the GP. After my kidney cancer, I had yearly follow-up appointments, but I'd never been given any information about CKD.
"I made enquiries and asked for copies of test results and found out I was 'coded' as having CKD stage 3 as far back as 2011. When I spoke to my GP, they explained that was for their information and they had just wanted to keep an eye on it, but I felt I should have known that.
"I was devastated and it was just so frustrating to know that in 13 years nothing was ever mentioned. I had already had cancer, and I felt like I could have used that information about my CKD to alter my lifestyle, for example by reducing salt in my diet.
"I should have been told and made aware when I was first coded with CKD. I feel strongly that patients should have a right to know about their own health and to have a say in how they are kept informed. It is a relief to be able to share my experience."
After a routine doctor’s appointment showed elevated blood pressure, Izzy was diagnosed with IgA Nephropathy (IgAN). He now receives in-centre haemodialysis and is a KPIN facilitator, helping kidney patients, carers and healthcare professionals to develop policy improvements and quality improvements and undertake research
"It was by pure chance that I was diagnosed. After a routine GP appointment, I was put on four weeks of blood pressure medication, but when I went back in my blood pressure was even higher. After blood tests, I was referred to a renal consultant who did a biopsy and more tests.
"I was at work when I got call to go hospital because of my creatinine levels. I thought it was just precaution, so I finished work before I went; when I got there, I was told my kidney function was only 18%.
"The diagnosis left me stunned. I felt normal and I just thought, what the hell is going on. The doctor asked if I had backache – I did, but I thought it was caused by my job as a paramedic. They asked if I was tired, but I thought it was just the 12-hour shifts. All the signs were there, but it was too late when I found out.
"I struggled on PD for just under a year and then my brother offered me his kidney, and I was transplanted in 2013. I didn't want to bring up transplantation with him – there is misinformation regarding transplant in my religion – but I spoke with my Imam, and he said, 'Which religion tells you not to save a life?' That gave me confidence to talk to my brother. The kidney he donated to me worked for eight years before the transplant failed, and now I'm on haemodialysis.
"I think blood tests should be standard if the signs of CKD are there. Screening is important. Now, I am concentrating on health and family and raising awareness. There aren't enough voices from ethnic minorities and the community when it comes to kidney disease, so I chat with patients and get them involved with kidney patient associations. If you are Black or Asian and over 30 with hypertension and diabetes, I think you should be routinely screened because research suggests that you may be more likely to have kidney disease. It is important to get every patient's perspective."
Angela was diagnosed in 2015 after a pulmonary embolism. She is currently living with CKD stage 5 with 14% kidney function
"I found out that I had kidney disease when I went into hospital and young junior doctor started chatting about 'my CKD'. I said that I had never heard of CKD, and he came back with some senior consultants who explained that I was 'CKD stage 4, bordering on stage 5'. I just replied, 'I don't know what you're talking about.'
"The consultants told me that my CKD was on my GP records. I'd had a blood tests two years prior, which showed CKD stage 2. There was even a note from the lab stating that my CKD needed to be followed up and monitored. That was the first I'd heard about it.
"After four years and an investigation, I settled out of court for compensation, specifically for anticipated loss of earnings based on how long consultants thought I was going to live for (it was implied that I wouldn't make 50 but I've turned 52 so they were wrong!). I think it was the anger that kept me going.
"My current GP surgery is fantastic. It's rare that I am unwell, despite my CKD, but when I do contact them, I get seen that day, either in person or via a phone consultation. I have a yearly health check, and the chemist contacts me every six months to ensure my medication dosage is correct.
"CKD has affected my life. I've gone from being independent and having a full-time job, to being someone who can't work and has to use a mobility scooter. I'm okay around the house, but if I'm out for the day or shopping, someone has to go with me.
"I just wish my GP had told me when I was first diagnosed with CKD stage 2. I was on medication for my ulcerative colitis and secondary arthritis in my hip, including ibuprofen. I have been told unofficially by health professionals that if my CKD had been caught at stage 2 and I had changed my medication, my kidney disease might not have progressed as much as it has. From what I see online, it's not only me that has had these issues. But I do still enjoy life, I just have to do things at my own pace. I can still misbehave as well as ever!"
Lee was diagnosed with FSGS at 18 years old, after suffering with headaches and exhaustion. His GP at the time did not mention Lee’s kidney function was declining
[Lee's story to go here]