Watching my little boy go through dialysis and trying to find the energy to help him manage the side effects of his kidney disease was so stressful. It is so difficult to watch someone you love go through that.
My experiences of CKD
"My boy, Oskar, was four years old when he was diagnosed with chronic kidney disease (CKD). We nearly lost him; one day I had a fit, healthy boy and then the next he was in kidney failure. I felt isolated. My son was very ill, and I didn't have time to prepare or process what was happening because Oskar had to start dialysis there and then. A few weeks after the diagnosis was when I started to really deal with the diagnosis.
"Initially we were told by a few different GPs that he had a virus or tonsilitis. We received antibiotics, but the next day, I could see that Oskar was really struggling. He was lying on the sofa, short of breath, very swollen, unable to walk, mostly sleeping, and being sick. I genuinely felt he was dying, so we went to Leeds General Infirmary because someone had advised us years before that it was a clinical hospital and one of the best.
"As soon as they saw Oskar, they said his skin colour didn't look right, he was very swollen and he looked extremely unwell. They did blood tests, which showed his creatinine was over 600, and his blood pressure was dangerously high and he was diagnosed with kidney failure.
"It was the most distressing experience of my whole life. It felt as if every day brought with it more challenges and it all felt so overwhelming. Leeds General Infirmary truly saved my boy. They told us that if we had arrived just 24 hours later, Oskar wouldn't have survived."
"Oskar had start dialysis immediately as his kidneys had failed completely. There were no different treatment options, we had to go with the quickest option which was haemodialysis (HD). He had lots of muscle cramps, and he was in a lot of pain. He had diarrhoea, his blood pressure was swinging, he was sick and fatigued. He was just really struggling, and we were told after a few months that they didn't want him to continue that traumatic experience as a child, so we switched to peritoneal dialysis (PD).
"PD was far more gentle and Oskar dialysed for 10 hours per night. He was still fatigued but the other symptoms were not as severe, and he could continue going to school though he was only able to attend two days a week. PD was a better quality of life for him – he was able to attend school every day – but watching my little boy go through dialysis and trying to find the energy to help him manage the side effects of his kidney disease was so stressful. It is so difficult to watch someone you love go through that.
"I was not able to sleep at night from the worry, and even the smallest obstacles felt like mountains to climb. I immediately put myself forward as a potential kidney donor, but juggling Oskar's care and having tests to find out if I was a compatible match was very tough for us. We just wanted our old life back where we were a 'normal' family and mum and son.
"But we adjusted and through it all, we learned that we are much stronger than we thought. Oskar, his dad Adam and I started a new chapter in our life and with support from wonderful staff at Leeds General Infirmary and St James's University Hospital in Leeds, we turned up to dialysis, managed the tests and lived our lives.
"While Oskar was on dialysis, I was being prepped to be a potential kidney donor and about nine months after diagnosis, I donated my kidney to Oskar. He was just five years old."
My role is to listen. I often speak with people in crisis, or who have just received a CKD diagnosis and feel, as I once did, that their whole life has been turned upside down.
My role at Kidney Care UK
"Over three years ago, I started work for Kidney Care UK as a Patient Support & Advocacy Officer (PSAO) supporting patients and their families living with kidney disease. I knew about the charity from our renal social worker; she applied for a Kidney Care UK patient grant for me when Oskar was diagnosed to help with hospital expenses and travel.
"I found out more about Kidney Care UK from reading information on the website and getting Kidney Matters magazine delivered to me at home. Years after Oskar's diagnosis, I was working at Citizens Advice and while I loved that job – I was happy I could help other people – what I was missing was the emotional aspect of supporting people.
"I was looking for a job and Kidney Care UK were looking for a PSAO for Yorkshire! I just knew the job was what I wanted. I wanted to be there for people who are going through what I had been through years before, to be a listening ear for others.
"The first thing I try to do when I call someone is to acknowledge that I hear them and their worries. My role is to listen. I often speak with people in crisis, or who have just received a CKD diagnosis and feel, as I once did, that their whole life has been turned upside down. I want to know their story, what their worries are. Once I acknowledge and understand and hear them, we can focus on what I can do to help. Whether that is just a chat, talking about concerns and wellbeing, or something practical like help with information, benefits or grants."
"When I am on a call with a patient and after we chat, you can hear and feel their relief that someone has listened to them. Kidney Care UK is very patient-centred, and I can speak with patients as many times as I need to. I manage that journey and I love that. I am given space and time to work together with patients. Just knowing I can be there for them whenever they need me is the highlight for me.
"I love my job, and I hope my experience with Oskar helps me understand what other people might be going through. When someone is on the phone, I can picture their face when they were diagnosed, or the dialysis unit they attend. You see things differently if your life has been affected by CKD.
"I try to offer reassurance, based on my own lived experience, that it is possible to live with kidney disease. I know how worrying it can be to change from one mode of dialysis to another, I know the anxiety of not knowing what to feed someone with CKD who has no appetite, I know what going through the living donor work-up feels like – the stresses, but also the incredible joy of finding you are a match and can play an amazing part in saving someone's life.
"But everybody's experience is unique. There is no 'this is what usually happens.' Every person absorbs and processes information in their own way. It is my job to work out how I, or the team at Kidney Care UK, can help best. It is a privilege to be able to share parts of my experience to help ease someone else's worries."
Karolina, her partner Dariusz and Oskar and Karolina and Oskar celebrating his 10th 'kidneyversary'
Life is lived in chapters, and we are enjoying our chapter right now.
Being part of the transplant community
"In 2024, I attended the British Transplant Games for the third time. I competed in the Donor Run. I say 'competed in' but in this race we all just celebrate being with other people who have all gone on to save someone's life through the miracle of donation.
"As a living donor and a parent of a child who has received a successful transplant, the British Transplant Games bring a mixture of emotions. They remind me of the difficult moments we have endured – and survived. In those times of worry, you feel that nothing will ever change.
"But the British Transplant Games also remind me that because of the miracle of transplantation. I got my boy back – his energy, his appetite and his cheeky smile.
"Oskar is now back in full-time education and just watching him charge around exhausts me! I am just so grateful and proud to participate in the Donor Run. We are attending the 2026 British Transplant Games in Sheffield and I will be taking part in the Donor Run again to celebrate our 10th Kidneyversary.
"CKD is unpredictable, this is what I have learned at Kidney Care UK. Speaking with patients makes me enjoy the time I have now and helps me reflect on life and joy. Life is lived in chapters, and we are enjoying our chapter right now."