I’m Shona. I was diagnosed with CKD in 2018 and then IGA Nephropathy in 2019. I have currently been on peritoneal dialysis for the last three years and was on the transplant. Unfortunately, I had a stroke at the end of January 2026, so decided to suspend myself to focus on my recovery. I am hoping to go back on the transplant list, but my youngest son is considering donation a kidney to me if he is a match (but needs to be over 30 to do so). I became a volunteer for Kidney Research UK in December 2025 to give back to the kidney community. Looking forward to being part of this new forum.
I had my right kidney removed In 2022 , its been a problem since I was a baby ,I was getting kidney infections constantly , I have now gone to stage 3b with a single kidney, i need to do anything I can for it not to drop any further
Welcome Sarah. Sorry to hear that things are difficult for you. I hope that Kidney Community offers a way to gain some clarity and connect with others.
Welcome Shona. Great that you’ve signed up as volunteer with us. I hope you find the forum a great place to connect with others in a similar situation.
Hi , I’m Stuart , 3 years and two months post transplant at Addenbrokes from a deceased donor. Kidney itself is doing fantastic ! eGFR still 90+ ! , however still getting side effects from the various associated medications you have to take , which we hope to iron out soon
Hi All, I am Allan, I had kidney cancer in 2019 and originally had a robotic partial nephrectomy planned - however there were complications and severe bleeding, and the team decided to operate the conventional route, and removed the whole left kidney via an incision in my lower left abdomen - I have had annual checks since and been clear of cancer.
My right Kidney is doing a great job - I am 65 on the 27th Feb - and life is good
Hi everyone, I have just joined, this group. I was diagnosed with igan 5 years ago. Egfr sits between 28 and low 30’s. I have participated i a clinical trial and currently take sparsentan daily
Hi everyone. My names Jill and I’m 6 years post living donor kidney transplant. I had the transplant during Covid March 2020. At Addenbrookees. It was discovered I had kidney disease when I started nursing in 1978. This progressed over the years and I had my right kidney removed after many infections and uncontrolled Hypertension. I was diagnosed with Vasculitis in 1998. I have been in remission since 2019. I had to retire early aged 51 due to chronic kidney failure. ‘Sidney’ my kidney is doing well. Forever grateful for the ‘gift of life’
My name is Jim and I live in County Antrim with my wife of some 40yrs.
My kidney journey was gradual starting off with the Low Clearance clinic at Antrim Area Hospital and I have to admit that I was a tad confused by the process and possibly in denial that I had kidney disease.
However, having been informed that I had CKD I went to the clinics and read various pamphlets which were really informative and helped me accept that my life had changed and I would have to adapt to a new regime.
Within a couple of years I was fitted with a catheter to allow me to self dialyse and also continue to work away from home.
Unfortunately after almost 5yrs I had series of falls leading to injuries and an admission to Guys hospital were I was treated and also fitted with ‘lines’ for Haemodialysis.
I then returned home as I felt that I could not continue to work 5-6 days per week and have treatment for 3 days.
Now into my third year attending the renal unit at the City Hospital who provide a great service.
This is only a snapshot of my renal life as I have experienced problems and injuries but I won’t cover these in this communication.
Best wishes to anyone who reads this and hopefully finds comfort in my experiences.
My name is Doug, 62 years young. I was diagnosed with CKD in 2015, dialysis in 2018 and transplanted in 2021. I have been a volunteer community ambassador since 2019, learning new things everyday.
Hi all, I’m Hayley. My kidney journey started when I developed GPA while at uni in 1998 which scarred my kidneys. I dialysed for about 6 and half years, during which I had some bowel removed due to sclerosing peritonitis, and had a tracheal reconstruction because of the scarring from the GPA. I was transplanted in 2007, an angel donor, and Sid the Kid (another Sid!) is still doing well today. My EGFR last week was in the 70s, and I am endlessly grateful for this gift of life. I struggle with the breathing still, and I’ll never be an athlete, but I just make things work, which we have to right?! Sending my best wishes to all in the Kidney Community.
Welcome Jim. Sorry to hear that things have been difficult for you. I hope that you find Kidney Community a good place to connect with others and find mutual support.
Welcome Doug. Great that you serve as a Community Ambassador with us and I hope you’re enjoying your experience as a volunteer. Hope you find the online community useful and supportive.
