Connecting with other patients makes life with kidney disease less lonely

13 May 2026

Staffordshire mum, Holly Acton, was unexpectedly diagnosed with kidney disease at the age of just 28, she was thrown into an unfamiliar world of chronic illness and treatments. It was overwhelming.

Now 32, she says: “I remember crying when the doctor told me I needed dialysis. It all sounded so scary. I didn’t know what to expect. However, it turned out it wasn’t the end of the world for me.”

One of the main sources of support for Holly in adapting to life with kidney disease has been connecting with other patients facing similar challenges.

Holly says: “It has helped a lot, engaging with online communities where people talk openly about the challenges they face and how they continue living their lives. It gave me a lot of insight and answered so many of the questions I had.

“No matter how much support you have from friends and family, it can be lonely without other patients to speak to. It’s hard for people to understand what it’s like to have kidney disease unless they’re going through it themselves. I’ve developed friendships with other patients and it’s nice to know I’m not alone.

“I’ve benefited from other people’s experiences and now I share my own. We’re all going through our own journeys but there’s a lot we can learn from each other.”

Holly, in hospital with an oxygen tube — Holly in hospital

Holly’s story

In 2021, while pregnant with her third child, Holly’s blood pressure was dangerously high. When her doctors were unable to reduce it, Holly had to give birth to her son, CJ, prematurely at 25 weeks - leading to a four and a half month stay in a neonatal intensive care unit and 18 months of needing oxygen.

After giving birth, Holly had a kidney biopsy, and was diagnosed with a type of kidney disease called IgA nephropathy. Her kidney function declined over the following year, leaving her needing dialysis.

Holly says: “Everything changed and flipped my life upside down. My main concern was my son, so I didn’t have time to register just how serious my kidney disease was at first. I’d never noticed any symptoms and assumed the tiredness and sickness I had felt during my pregnancy was normal.”

The following Christmas, Holly was taking her two daughters to see a pantomime when she received a call from the hospital asking her to come in straight away. Her latest blood test results showed her kidney function had declined to just 8%. Dialysis was now a necessity.

To manage dialysis around caring for her children, Holly chose to have peritoneal dialysis at home, rather than haemodialysis in hospital.

She says: “It worked better with our routine to dialyse overnight and be there for my family in the day. Particularly with CJ being so unwell. It was difficult planning our lives around hospital appointments and treatment, but we’ve always tried to keep a positive outlook. Seeing people having their transplants gave me a lot of hope that one day I would get a new kidney too.”

Very tiny baby boy in an ICU incubator — CJ was born prematurely at 25 weeks.

Receiving a kidney transplant

Holly needed dialysis for two and a half years before she finally received a transplant thanks to her sister, Rebecca who donated a kidney to a stranger as part of the UK Living Kidney Sharing Scheme. As Rebecca was not a match to donate directly to Holly, the scheme enabled them to match with another donor-recipient pair, facilitating a transplant for each patient.

Rebecca, crouched down next to Holly who is sitting on a chair. — Holly (right) with sister, Rebecca

Holly says: “I’m so grateful to my sister for making my transplant possible. She has recovered quickly and is doing amazing. For me, my health has continued to be up and down. No longer being on dialysis is a huge positive but I still don’t feel amazing.

“People think that once you have a transplant you’re ‘fixed’ - but that’s not the reality. There is still so much to consider with complications and all the medication you need to take. I’m experiencing severe back pain and have a cyst on my new kidney that I’m having tests on. I also have steroid-induced diabetes related to the medication I needed to try and slow the decline of my native kidney.

“I hope we’ll be able to resolve those complications soon, allowing me to get back to more normality. No longer needing to hook up to a dialysis machine is already a big step to more freedom for me and my family. Once my health is under control, I hope we’ll be able to do more activities and go on holiday together.

“CJ is doing amazing and is almost five now! He is non-verbal and lives with autism, but he lights up every room and is an absolute miracle. He’s due to start a special education needs (SEN) school in September and is thriving. Going through everything has changed my perspective on life. It makes you realise life is short, so it’s important to do what makes you happy and fulfilled.

“I hope sharing my story will help other patients feel less alone. There are so many of us facing similar challenges with kidney disease. Finding an online community to share tips, fears and reassurance has been so important to me in navigating my journey so far. I hope other patients reach out to find support and friendship too.”

5 year old little boy looking up towards the camera

Kidney Community

A new dedicated online forum for kidney patients and carers, helping people connect with others who might be going through similar experiences.

Co-developed with patients and carers, Kidney Community is a welcoming, safe space where you can share experiences, ask questions and find information and support.

Visit Kidney Community