When Dee Moore started experiencing flu-like symptoms, she wasn't initially concerned. But after struggling for weeks and suffering a stabbing headache it was impossible to ignore, a hospital visit was needed.
There, she was stunned as a routine set of tests revealed her kidneys were failing and she was close to needing dialysis or a transplant. The 45-year-old, from Birmingham, had no idea such a serious condition could be the cause - and admits now that she had expected to be sent home from A&E. But instead she was admitted to Queen Elizabeth hospital for eight-and-a-half-weeks in August 2018.
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There, Dee was given the diagnosis that would change her life - she had chronic kidney disease, which is incurable.
CKD has been dubbed the 'silent killer’ because it commonly doesn’t have symptoms until it becomes serious — resulting in an estimated 40,000 deaths each year in England alone.
It comes as new research by YouGov commissioned by health-tech company Healthy.io reveals 75% of 2,000 adults polled didn’t know what CKD is - despite millions of people in the UK being at risk.
A majority are also unaware that CKD can lead to cardiovascular disease, despite the condition causing more deadly heart attacks than diabetes and smoking.
"The doctors in the hospital said my kidneys were failing but they didn’t know why,” Dee said.
"This came as a shock because I’ve never had issues with my kidneys. I’d been eating well and taking care of myself. I don’t drink alcohol, I don’t smoke, I drink lots of water, so it made no sense. I was bewildered.
"My kidneys were actually failing over a period of time. No one picked this up despite being under the care of the NHS and having regular blood tests for years prior.
"I spent more than eight weeks in hospital - they knew my kidneys were failing but they couldn’t work out why. It was an emotional rollercoaster - I was told it could be cancer, tuberculosis.
"When they finally diagnosed me, I felt relieved. Before this, I had never heard of chronic kidney disease, and didn’t know what it was. Since my diagnosis, I’ve called myself a kidney warrior - it’s my mission to educate everyone I can about chronic kidney disease so no one has to go through what I did.”
Chronic kidney disease is the gradual loss of the function of the kidneys, which filter waste products and excess fluids from the blood before they are excreted through urine.
As CKD advances, dangerous levels of waste build up in your body. It can be detected early on via blood and urine tests.
The Healthy.io survey showed while 80% recognised smoking, having high blood pressure or being obese as risk factors for cardiovascular disease, some 76% were unaware people with CKD are more likely to die from complications relating to their heart than kidney failure.
Healthy.io is working with the NHS to provide at-risk patients with CKD tests that can be used at home via an app that turns a smartphone camera into a diagnostic medical scanner.
Since launching in the UK, over 160,000 people aged between 18 and 105 have used the Minuteful Kidney app, via 800 GP clinics across the UK. More than 40% of people have been found to have abnormal or high abnormal results, indicating that they might have CKD.
In 2003, when Dee was 25 and pregnant with her first child, she experienced a stabbing headache - it resulted in her needing lifesaving brain surgery after being diagnosed with lymphocytic hypophysitis, a rare, autoimmune condition of the pituitary gland.
She had been under the care of the NHS since, undergoing regular blood tests - but her decreasing kidney function wasn’t picked up from the results.
When in August 2018, she felt the familiar pain in her head, she assumed it was something related, and headed straight to the hospital.
Dee had been experiencing exhaustion, but had put it down to a new fitness regime the months before.
"I had lost three stone in weight but then I started feeling rough. It felt like flu-like symptoms; I felt hot, sweaty, and run down, and even though I progressively felt worse,” Dee says.
"I stopped training, but I told myself I’d feel better after taking some annual leave at work. But then I started getting a headache that I couldn’t ignore.
"I went to A&E expecting the doctors to examine me and send me on my way. But something was seriously wrong. A doctor came back with my blood test results and told me I had to be admitted.
"During the second night on the ward, I started to feel so cold, my teeth were chattering and my whole body was shaking, but in reality I had an extremely high temperature, almost 40C.
"I was soaked in sweat, through my clothes and sheets. This continued for seven-and-a-half weeks and was extremely tough.
"After a week of tests, I was told my kidneys were failing but they didn’t know why. So they started doing tests: CT scans, MRI scans, full body scans, ultrasound, kidney biopsies; you name it I had every test available. But no one seemed to know what was wrong with me.”
Dee was told by doctors that she might have cancer or tuberculosis, but tests showed this wasn’t the case.
Dee’s kidney function had started to slip dangerously close to needing dialysis or even a transplant. She was given steroid tablets. After one dose, she saw a difference to her night fever and sweats, the second dose stopped them.
"The next day, when I didn’t get a fever, I thought, ‘it’s over, finally’. I was told I could go home after they explained I had stage four chronic kidney disease. They could pinpoint the cause down to an infection, but they didn’t know what had caused the infection.”
Dee believed she could "soldier on” and the condition would resolve itself. But that wasn’t the case. Close to Christmas 2018, her kidney function plummeted again, and her doctor wanted to try her on a stronger treatment in February 2019. But it failed.
"It hit me like a tonne of bricks that this was going to affect me for the rest of my life. It wasn’t something that was going to go away - it was life changing,” Dee said.
"I started to think about what I was going to do, and what my future would look like. I did some soul searching and research, and I thought maybe I should share that with other people, so I started a vlog, thinking maybe it would help others and maybe it would help me.
"I didn’t want to do something retrospectively, I wanted to share what was happening to me as it was happening, so it would be authentic and real so it would encourage them too.”
Dee started an Instagram account and a channel on YouTube in April 2019, chronicling her journey.
Then, in May 2019, Dee was delivered another blow from her consultant. She was told her kidney function was so low, she was six months away from needing dialysis - a procedure to remove waste products and excess fluid from the blood.
She was also told that because she had gained weight - due to the steroid treatment - her BMI was too high to be placed on the transplant list, so she wouldn’t be eligible.
"Immediately I said I’m going to do everything I can to make sure that’s not going to happen. And I left thinking I’m going to fight this. Then I started feeling low. I went to see my health coach and she said something that changed my life. She said, 'you need to choose to live’. So I started saying those words until I was shouting.
"I researched what I needed to do to help myself in terms of diet and exercise. I started to gig again - I’m a singer - it was all challenging, but I needed to do it.
"I started doing workouts and posting them on Instagram - the people watching gave me the motivation to keep going.”
In August 2020, Dee started a podcast called Diary Of A Kidney Warrior, sharing her journey to help raise awareness of her condition.
Dee’s lifestyle changes have meant she has avoided needing dialysis. Her podcast has grown in popularity and she works closely with charity Kidney Care UK, raising awareness of CKD.
"Greater awareness of CKD even at primary care level, could have resulted in me not having to be admitted to hospital and have the experience I did,” she said.
"I want to show people there is hope. That kidney disease is not a death sentence - you can live a full life whatever stage you have.
"You may have to do things differently, you may have to cut out things you’re used to eating and drinking, but I want to encourage people to take care of themselves and each other. Choose to live.
"Living with CKD is a daily battle that I am committed to win. I have been fighting with a double edged sword and although I am tired, I am determined to keep fighting.”
Learn more about CKD here.
How a simple test could help
The first step in detecting chronic kidney disease is with a urine test.
The NHS recommends those with diabetes have this test annually, but in 2021 1.7 million people living with diabetes didn’t.
According to the YouGov poll commissioned by Healthy.io, only a quarter of those questioned (26%) know testing is available.
Healthy.io is working with the NHS to provide at-risk patients with CKD tests that can be used at home via an app that turns a smartphone camera into a diagnostic medical scanner.
Since launching in the UK, more than 160,000 people aged between 18 and 105 have used the Minuteful Kidney app, via 800 GP clinics across the UK.
More than 40% of people have been found to have abnormal or high abnormal results, indicating that they might have chronic kidney disease.
Separate analysis by Healthy.io estimates that if its test was adopted nationally, the resulting detection could avoid more than 19.7 million hours of kidney dialysis, translating to cost savings of £696m per year, or over £3.4bn in five years.
