Peer Support

Julie

I'm Julie. I donated a kidney in March 2022 to my husband's nephew. I was not related to the recipient but I was an extremely good match for him, which is why I wanted to donate. I want to help people who are considering kidney donation, to explain what the whole process was like, and how you can best look after yourself, post donation.

Simon

Hi, my  name is Simon, and this is my donation story.

Back in 2019, my youngest daughter Olivia became seriously ill with acute liver failure and needed an immediate transfer to King's College Hospital in London via emergency ambulance. On arrival, she was potentially in the position of needing a transplant herself. However, thanks to the amazing work of everyone in the ICU liver unit, she pulled through.

As a thank-you, I decided to become a donor myself. Although Olivia made a full recovery, donors are still needed, and so in November 2021, at the third attempt, the operation went ahead. Since then, we have also done the Great Hospital to raise funds for Kings. This is my donation story, and I hope it inspires others to think about live donation.

Alice

I'm Alice, I'm 29 and currently live in the depths of the countryside in Warwickshire. I donated a kidney to my mum back in January 2024. I'd love to chat with anyone who is looking for support in donating to a parent or is currently in the process of.

Alisdair

I'm Alisdair, and I donated a kidney in 2022, through the Living Kidney Sharing Scheme. I am not a direct kidney-match for my wife, who required a kidney-transplant, but we were successfully matched through the paired/pooling scheme. Happy to talk about my experiences with anyone considering becoming a living donor.

Heather

Hi, I'm Heather,  Mum to 8 children, Nana, and one of the two founders of Kidney Disease And Renal Support (K.D.A.R.S For Kids) a support group for families with babies, toddlers and young people who are living with CKD and renal issues. 

Alex

I have spent time on PD and HD as a child, with the support of my parents before receiving a transplant in 2013. When I lost the transplant in 2020, I managed my own PD for a couple of years, before switching over to HD again. I am currently on HD, which I fit in around also being a student at university. 

Available to talk about: C3G, PD, , In centre Haemodialysis, kidney from a deceased donor, Transplant rejection

Nick

I was first diagnosed with Chronic Kidney Disease in 2008. My kidneys failed in 2021 and I went onto the Transplant list. I did manual peritoneal dialysis for seven months before getting the call in August 22 and successful Transplant.  

When my kidneys first failed, I found the peer supporters advice and help really supportive. Practical tips from those who had been through it. Chatting with them helped me to decide that manual dialysis was for me for the freedom it gave me. I enjoyed the freedom of being able to dialyse where I wanted and was able to carry on working full-time as well as activities with my family.

Available to talk about: PD, managing PD with work, kidney from a deceased donor

Joyce

I was diagnosed with CKD at 18 years old in 1981, 5 days before starting dialysis. I was on limited care HD for 9 years before my first transplant. I did 3 years in centre followed by 3 years nocturnal home HD before my second transplant. Being at home allowed me to continue working and travelling because I had more control over when I dialysed. I was also my husband’s main carer for 2½ years when he was on APD.

Available to talk about: HHD , Transplant from live donor and deceased donor, kidney failure and In centre Haemodialysis

Patricia

I have been a kidney patient since 2010. I did peritoneal dialysis (PD) until I received a kidney in 2014.  Sadly that kidney failed in 2020.  I chose to do PD again until November last year when I received a new kidney.

Available to talk about: PD, Diabetes and CKD, Transplant from deceased donor, transplant rejection

Gill

I carried out peritoneal dialysis at home before having a kidney transplant. The training given and ongoing support was excellent and gave me the skills and confidence that I needed.

Most of the time I dialyse overnight attached to an APD (automated peritoneal dialysis) machine which gave me more freedom during the day.  If I wanted to go away for a couple of days I would dialyse during the day.  It just meant taking some bags of fluid with me and working the dialysis around my days’ activities. It was empowering to be in control of my own treatment in this way.

Available to talk about: Peritoneal dialysis, Glomerulonephritis, Kidney failure, transplant from living donor

Peggy

I'm Peggy, I helped my husband with haemodialysis at home for 9 years - with all the advantages and stress this brings! 

Available to talk about: choosing dialysis options, home haemodialysis, supporting a partner with a kidney condition.

Jenni

I was diagnosed with CKD in 1990 aged 20. I am currently doing in center dialysis but have previous experience with Home Haemodialysis and Peritoneal Dialysis. I have 31 years experience living with CKD. 

Available to talk about: Home haemodialysis ,In centre haemodialysis , 2 failed transplants from deceased donors

Kasonde

I have been living with chronic kidney disease for over 20 years. I am dialysing from home, second time round after enjoying 14 years with my transplant “Naomi”.I am still on haemodialysis, now dialysing at night, happily and handily  because  I work.

Available to talk about: Transplant from deceased, Transplant failure, Home Haemodialysis , Nocturnal HHD

Caroline

Hi I’m Caroline living in Northern Ireland. I have been a kidney patient for over 6 years, 2 years in unit / hospital dialysis and 4 years at home.

Available to talk about: Home haemodialysis In Centre Haemodialysis and kidney failure

Ali

I’m Ali and I’ve been a kidney patient for 25 years. I spent three years on dialysis during which time I did peritoneal dialysis (both APD and CAPD), in-centre haemodialysis and home haemodialysis. I was lucky enough to receive my kidney transplant in January 2023.

Available to talk about Peritoneal dialysis , haemodialysis in centre, Home haemodialysis and transplanted, reflux nephropathy

Chris

Retired, living in Torquay with my wife, Jenny. I began dialysis in May 2020 and moved to home haemodialysis in March 2021, not a moment too soon, as I was much fitter on HDD. I was lucky enough to receive a transplant in October 22 - new difficulties to deal with, but much more personal freedom available.

Available to talk about: FSGS, kidney from Deceased donor, Home haemodialysis, In centre Haemodialysis, now Transplanted

Ros

I am Ros and have supported my husband on PD and subsequently Home HD and also my brother who was on PD for the last 5 years of his life.

Brian

I was 'Dialysis Nurse' for my wife for 14 years of home haemodialysis. Great responsibility, but very rewarding.

Tarsem

I was briefly dialysing at home, then in Clinic, I have had a 2nd Kidney Transplant 3 years ago. I am very passionate about supporting about kidney patients & their families.

Available to talk about: Home haemodialysis, transplants, CKD & Diabetes, PKD

Jeff

I had one year on hospital dialysis and 5 years home dialysis. I had a kidney transplant in November 2021

Available to talk about: Home haemodialysis, Transplant from deceased donor, kidney failure.

Jackie

I am currently a Home Haemo dialysis patient ( with the help of my lovely husband ) of six and a half years plus years on a NxStage machine.

Dana

I have been a kidney patient for 11 years with IGNa doing dialysis for 18 months with the last year spent doing on home HD. 

Available to talk about: Home haemodialysis, In centre Haemodialysis, transplant from a deceased donor, IGA Nephropathy

John

I have been on haemodialysis for 4 years, 3 of them at home. It has  been very successful, the support from the home dialysis team has been a great support when needed.

Maz

My name is Maz, I was diagnosed with PKD (Polycystic Kidney disease) in 1990, After many years of kidney management, I went onto Haemodialysis at my local centre, with plans for a family member to donate a kidney to me. I had a cadaveric transplant in 2013. Still going strong.  My wife had a living donor transplant from a family member in 2014.

I have been involved in Peer Education at my local hospital, where as volunteers we spoke to pre-dialysis patients to make them aware of the different treatment options, and to answer any questions that they had. 

I volunteer as an Organ donation ambassador for the NHS organ donation team, raising awareness of the need for more donors, especially form the BAME communities.