I had no idea my lack of energy was a sign my kidneys were failing
A 28-year-old lawyer was left in disbelief after suddenly finding herself in hospital and being told she’d need a transplant or dialysis to survive kidney failure.
Ellen Swarbrick, from Manchester, says: “In 2023, I’d moved to London to train as a lawyer and it was a really exciting time in my life. I’m a very social person and was working hard. Slowly I began to find myself getting home from work and feeling shattered. I’d lost the energy to do anything.
“I assumed it was because life was so busy and had no idea it was a sign of something more serious. Being diagnosed with a type of kidney disease called IgA nephropathy the following year was terrifying. I cried myself to sleep every night for about six months after that. It took some time to come to terms with the fact I’d need a transplant.”
Warning signs of kidney disease
Every day 23 people start treatment for kidney failure. However, many are not aware of problems with their kidneys until only dialysis or a transplant will keep them alive.
This was the case for Ellen, who only discovered she was living with kidney disease as she was entering kidney failure. She is now sharing her experiences to raise awareness of warning signs that could help others get diagnosed at an earlier stage.
Ellen says: “In hindsight, I can see there were some signs before I ended up in hospital. I just never put two and two together. I didn’t know anybody around my age who had gone through anything like this with their health.
“I attributed my tiredness to being busy. I noticed puffiness in my face but assumed it was weight-gain from being in a desk job and not exercising as much. I’d been taking antihistamines for hay fever because of my puffy eyes, but it wasn’t helping.
“On a work trip abroad, I felt nauseous and my ankles became swollen, but I thought it was because of the heat. I remember sending photos to my friends and laughing about the size of them. I just had no clue that swollen ankles were a dangerous sign of health problems.
“When I got home, I still wasn’t well. I felt like I was developing the flu. The next day I woke with patches in my vision. It was really scary. I called 111 and was told to go to the eye emergency centre at St Thomas’ Hospital. I could barely see where I was going.
“My blood pressure was really high and that had caused fluid to leak into my eyes. I was sent to A&E and spent two days in ICU before moving to the high dependency ward. I was on a drip to manage my blood pressure and had loads of tests and scans.
“I was told my kidneys were ‘pretty bad’ but until that point, I didn’t realise my kidneys were related to my high blood pressure or other symptoms. I assumed it would be something I’d recover from, but then I got the news from my biopsy that I was at stage four chronic kidney disease. It was so strange finding out I’d need a transplant or dialysis.”
Living with chronic kidney disease
Ellen’s kidney function continued to decline and within ten months her kidneys had completely failed.
She says: “After my diagnosis my mental health went down the toilet. It massively knocked my confidence. I felt like nobody understood me and I withdrew socially. It was difficult to join in with work socials when I couldn’t drink. I felt so tired all the time anyway. I became a lot less outgoing and went into myself.
“I didn’t want people to know that I was unwell. I remember going back to work and pretending everything was fine. I hadn’t come to terms with my diagnosis. I didn’t want to accept the fact I’d need adjustments, it felt very isolating.
“What made me feel less alone was listening to other young people sharing their experiences on social media. I realised that kidney disease doesn’t only affect older people. Learning about how other people were dealing with their own diagnoses was a huge help.”
A transplant from Mum
As Ellen’s kidney function deteriorated, her parents, brother, partner and friends all put themselves forward to donate a kidney.
Ellen says: “It was a race against time to have the transplant before I needed dialysis. I was scared, although I have developed a more positive view of dialysis having seen the experiences of others. We are lucky to have a treatment option which keeps us alive after organ failure, and I know I may have to rely on it in the future.
“I was fortunate to escape dialysis this time, as I was being prepared for treatment at the same time my mum was having her final tests ahead of donating a kidney. She was the best match, and our amazing transplant nurse arranged the surgery to happen ten days later.
“The transplant itself was such a blur, it all happened so quickly. I was excited and scared. It was emotional thinking about mum doing something so incredible for me. The doctors were brilliant at keeping me informed and I knew her surgery had gone well before I had mine.
“The thing that had worried me most was immediate transplant rejection and my mum going through surgery for nothing, so it was a massive relief when I woke up to find that the kidney was working well. There were concerns about Mum for 24 hours post-surgery, but since then her recovery has gone well. She’s completely back to herself now.
“The transplant was the start of me being able to live again. I feel like I’m getting my personality back and I’m enjoying being at work again. I see my friends more often and have started running. I have so much more freedom. My mind feels peaceful again. Whether my transplant lasts for two or 25 years, I want to make sure I’m making the most of that time.
“I hope that by sharing my story, more people are diagnosed sooner so that their kidney function can be protected. That way they may not need a transplant until they are older, if they do at all.”
Kidney health check
There are estimated to be 7.2 million people in the UK currently living with chronic kidney disease, more than 10% of the entire population. However, symptoms can often remain undetected or attributed to other causes.
Knowing your risk of kidney disease could help you and healthcare professionals to protect your kidneys, preventing or delaying the need for life-altering treatments such as dialysis or a transplant.
Our kidney health check is a quick and easy online tool which you can use to help you understand if you are at risk.
Take your FREE health check today
Did you know that every day over 20 people start treatment for kidney failure?
Several things can increase your risk including diabetes, high blood pressure or being overweight.
Take our quick and easy online test to see if you are at risk.