Kidney failure and dialysis in my twenties was incredibly lonely

15 May 2025

A young mother from Leicester had her life torn apart when her kidneys failed suddenly at just 24 years old, resulting in five and a half years on isolating and life-restricting dialysis.

Ellie-Mae Steers, now 30, had hoped to have a new lease of life free from dialysis with the kidney she had received from her mum, but had to re-learn to walk and talk when the kidney failed and she had a seizure in 2020.

Female in hospital, with oxygen face mask giving a thumbs up

Ellie-Mae

Life-changing experience

Ellie-Mae says: “I was in a coma for two weeks. Waking up from that and being back on dialysis because my transplanted kidney had failed was the hard. After a few months I was able to leave hospital but needed to visit the dialysis unit three times a week while I waited for a second transplant.

“Kidney failure took away my health, my independence and my social life. I was very unwell on dialysis, meaning I was unable to work and had to move back in with my mum. Apart from my daughter, I had nothing going for me and it was very lonely.

“I didn’t know there were other people going through similar things, because I was the only young person on my dialysis unit. Just knowing that could have helped me feel less alone and would have made life more bearable. Being able to speak with somebody of a similar age who understood what I was going through would have been invaluable.

“Something needs to be put in place so young patients have somewhere they can turn for emotional and practical support. It’s incredibly hard feeling like your future is being taken away from you in your twenties. I’m such a positive person but there have been points where it has all been too much.”

High blood pressure caused my kidney failure

At 14 years old, Ellie-Mae noticed her health was declining when she began feeling dizzy and exhausted.

Ellie-Mae says: “I was an energetic child, always out with friends, but suddenly I had no energy at all. I didn’t feel myself and was taken to the doctors. They attributed my symptoms to my menstrual cycle and blood loss. However, things continued to get worse, and I temporarily lost my eyesight.

“That was incredibly scary, and I had an optician's appointment to find out what was going on. They discovered lots of spots behind my eyes and I was referred straight to A&E. I had so many tests and was in intensive care for two weeks.

“I was diagnosed with hypertension, and my blood pressure was so high that it displayed as an error on the machine. Doctors realised this was affecting my kidneys and I began taking medication to manage my blood pressure. That kept me well for close to ten years, during which time I became a mum. However, in 2019, my health deteriorated unexpectedly.

“I lost a lot of weight and was having trouble breathing. I was admitted to hospital and stayed there for about two months. My kidneys had failed, and I needed to go straight onto dialysis. I had no idea what that would mean for my life.

“I’d been cared for by hypertension specialists over the years but was completely in the dark about my kidney health. I should have been prepared for what might happen, but nobody warned me. I thought by taking my blood pressure medication, I’d be fine.”

Failed kidney transplant

It took a couple of months for Ellie-Mae's blood pressure to return to a normal range, and when she was finally able to leave hospital, she had to attend a dialysis unit three times a week for treatment that took four hours on each visit.

Ellie-Mae was on dialysis for about a year before a transplant from her mum gave her a new lease of life. However, just 18 months later, she was forced to return to dialysis for another four years when her transplanted kidney failed in 2020.

Ellie Mae says: “I began vomiting, had diarrhoea and had no energy. I couldn’t get out of bed and had to be taken to hospital in an ambulance. My new kidney started to fail, and I had a seizure which left me in a coma. My mum was told I was unlikely to wake up again, and if I did, I was likely to be brain damaged.

“When I did wake up, I was already on dialysis and was very confused. I had no idea where I was or what was happening. I lost my short-term memory and went into a child-like state. It was very frustrating, knowing what I wanted to say but finding it hard to articulate. I knew who I was, but when I spoke it didn’t feel like me.

“My muscles were so weak, and I had to build myself up again by learning to walk and communicate with people. I was determined to get my life back and my daughter was my biggest motivation.”

Female in hospital bed with young girl standing next to the bed holding her hand.

Ellie-Mae and daughter

Losing my independence

When Ellie-Mae was ready to be discharged from hospital, she moved in with her mum who became her carer during her recovery and supported her with dialysis treatment.

Ellie-Mae says: “I lost my independence, and it was hard only seeing my daughter for a few hours each day between dialysis, school and feeling exhausted. I’d only just felt like a normal young adult again after my transplant, and suddenly I was living with my mum, having to re-learn basic tasks and going through dialysis again.

“I made lots of progress in my recovery as my memory slowly began to return. However, I struggled on dialysis. I had to completely change my lifestyle. I had no energy, was only allowed to drink one litre of water each day and was regularly sick and in pain.

“I was the youngest person in my dialysis unit and felt so anxious and alone. Most other people were over 50 years old, and I didn’t have anyone I could identify with or talk to about how I felt. I was never offered any professional mental health support either.

“Being unable to work as a single parent meant I was eligible for more financial support than many other young people on dialysis. It has not been a lot, but I’m grateful it has kept a roof over our heads and put food on the table.

“I struggled a lot socially, not being able to do the same things as my friends and missing out. I couldn’t drink alcohol or eat food without regularly disappearing to the toilets to be sick. That made it hard to fit in when everyone else was having a good time.

“I hated being perceived as somebody who was ill and tried to mask how bad it was. It knocked my confidence. After my coma, my face was so swollen, and I had no hair because they cut it off to treat me. Needing a line in my neck for dialysis made me self-conscious and I dreaded it being visible in summer clothes.

“I found it really hard seeing other people on dialysis getting their kidneys, while I had to wait for such a long time. I would get angry because I wanted to get back to being myself for my daughter.”

Mum holding her little girl up while on holiday

Ellie-Mae and daughter

A second transplant

In 2024, after four years on the transplant waiting list, Ellie-Mae finally received the call she’d been hoping for, to say a kidney had become available.

Ellie-Mae says: “I was so excited. It was a whirlwind, but I was also scared about getting my hopes up, especially having lost my first transplant. When I woke up from surgery, my new kidney took some time to function properly. I had a lot of apprehension and was in hospital for another month continuing to have dialysis until I was discharged.

“I had to monitor my urine levels closely, but eventually the kidney began working really well and I began to feel great. It has totally transformed my life. I have been able to go on holiday with my mum and daughter and attend a wedding abroad. I’m in such a good place now and want to make as many memories as possible.

“I live a healthy lifestyle and try to take care of myself the best I can. However, there are still a lot of jobs I can’t do because my immunosuppressants make me more vulnerable to illnesses. Straight after my transplant a lot of the financial support I was entitled to disappeared, even before I was in a position to return to work.

“My ambition now is to establish a healthy food business. I want to bring goodness into people’s lives, and I hope my hummus brand will help achieve that. I also want to make a difference by raising awareness of kidney health and dialysis. Not enough people know about it, especially not people my age.

“Hopefully if I do need another kidney transplant, I will have the opportunity to plan for it. I would hate to need dialysis again. I’m just thankful that I’ve had really good friends and family who have helped me and my daughter through everything. Not everyone has that and there needs to be better support.”