My experiences of CKD

"I was diagnosed with chronic kidney disease (CKD) when I was 25, living in New Zealand where I was born and grew up. I was diagnosed by chance – I was ill in my first year of studying to be a teacher and I was told I needed a GP medical certificate. I went in to see my GP and came out as a kidney patient.

"I didn't know much about kidney disease at that time; I knew a bit about organ donation, I had heard of dialysis, but that was it. I went from being healthy, starting out in my career, to being told that I had focal segmental glomerulosclerosis (FSGS).

"The treatment was a high dose of steroids and other drugs to try to stop my immune system from attacking itself. That treatment worked well initially and at the time I was told I was as healthy as I'd ever be, and I was encouraged to go and do what I wanted with my life while I was able to.

"So, in 2013, I moved to UK for what was meant to be 12 months, to teach and travel (and I have been in the UK ever since!). Six months in, I relapsed and ended up back in hospital, being given steroids and drugs."

"I think at the time I just thought I'd recover and that would be that until I got much older. I really had no idea of the gravity of what was happening but in hindsight that was a good thing, because it meant I wasn't as fearful as I could've been.

"Fast forward to 2016 and my kidneys started to fail, and I was told I needed to go on dialysis. I chose peritoneal dialysis (PD) because it fit in with my life at the time, working as a primary school teacher. I had been on PD for two months when I got the call for a deceased kidney transplant. Luckily, that has been successful for the last nine years.

"Kidney disease and FSGS is life changing. But 'life changing' can go both ways, and while my life hasn’t gone the way I planned, that hasn’t always been a bad thing. Over time I’ve realised that while I now perhaps won't do some of the things I thought I would, there’ll be other opportunities instead, that are just as good and that make me just as happy.

"Even though I have been lucky enough to have a transplant, I am aware that it could all change next week. FSGS and CKD is unpredictable; I have no control over that besides keeping myself healthy. I know I am extremely lucky."

My role at Kidney Care UK

"My role at Kidney Care UK is leading the service for young adults aged 16-30 who are living with kidney disease. This involves managing the online community called Young Adult Kidney Group, coordinating peer support, and helping to organise Kidney Care UK’s free Young Adult Residential Weekend that takes place each year.

"Back in 2014, a friend of mine with CKD had attended what has now become the young adult weekend and recommended that I should go to the next one. At the time, in my nephrology unit, there was no one else in their mid-20s that looked like me, so I went.

"It was so great to meet other people my age, but we didn't have a way to stay in contact for the rest of year. So, some of the others from the residential and I started a Facebook group, and it just grew and grew. Eventually we realised that we needed a structure for the group, which at that point numbered several hundred members, because people were asking challenging questions that we needed assistance to deal with.

"We knew the group made a huge difference to people's lives and we were aware of Kidney Care UK, so we reached out and asked for advice and support. They saw the value in what we were doing, so my role was created to help the group and the residential to keep growing."

"While I am now older than the young adults in the group, who are aged 16 to 30, they realise I have been through something similar to what they have and that is a guiding principle within the residential. We get people who are hesitant to come, who don’t know whether it'll be suitable or if they'll enjoy it, so for us as a charity to be able to say that, as one of the leaders, I am a patient who used to come to the event as an attendee is so reassuring. Young adults know that the people leading the residential really understand what it means to live with kidney disease as a young person.

"My experiences definitely offer me a wider picture of what people with CKD are going through. While everyone's circumstances are different, there is a lot that people have in common and that becomes clear when I'm chatting with a young person. We'll start a conversation and I'll mention I am a kidney patient, and they realise they are speaking to someone who 'gets it'.

"I feel that my experience of CKD has shaped my attitude and is a strength and asset, especially when it comes to my job. I never thought I would leave teaching and work for a charity, but it is amazing how things evolve.

"I'm so proud of how our group has developed over the years. It now has over 1,000 members, many of whom have formed genuine friendships with people they’d never have had the chance to meet otherwise. My absolute favourite thing is being able to see someone go from feeling hesitant about interacting online or coming to the weekend to building up the confidence to do it, and then coming away having made a new friend or having learnt something that makes their experience of CKD that bit less difficult or lonely."