Neeta Kantepudi, 65, from Ealing shares her kidney journey with the National Kidney Federation to raise awareness to others.

"Initially I had gone to my GP for a routine cervical screening back in 1993, the urine test showed a high level of protein. From this result I was told I would need to go back to my GP for further tests. After the tests were done, the GP sent me to Hammersmith Hospital where I had a kidney biopsy, which confirmed kidney failure. The Renal Team at Hammersmith Hospital recommended Continuous Ambulatory Peritoneal Dialysis (CAPD) as it would allow me to live a relatively normal life, I was also put onto the kidney transplant waiting list.

When I got “the call” in 1995 to say I had a match for a kidney, I was called in by Hammersmith Renal team. I was really surprised to receive the call but also scared, at the time I had two young children and I was worried about them. I‘d never met anyone else who’d had a kidney transplant before so I felt quite nervous.

This transplant was unfortunately not successful as there was no blood flow and due to other complications, I was in a coma for four days and I could no longer continue with CAPD so I had to move onto haemodialysis.

In 1998 I was called again with a match, I had the transplant but the kidney went to sleep, after six weeks of biopsies and lots of strong medication the kidney finally woke up and I was able to go home. That kidney lasted a phenomenal 21 years. In 2012 I was diagnosed with non-Hodgkin’s lymphoma and, because of the excellent care and close monitoring from the Haematology Team at Hammersmith Hospital, the kidney stayed strong throughout cancer and chemotherapy.

The health of the kidney started deteriorating in 2019 and I went back onto dialysis. I was told that the transplant list was very long and, given my medical history, my best options were to either receive a donation from a family member or go into the pooled donor programme. My husband offered to donate his kidney to me, but he wasn’t a close enough match to donate directly so we entered the donor pool. This is a fantastic programme as it gives people like me the opportunity to receive a transplant that they might not get by depending on the normal waiting list.

Matches were found for us twice in 2019 but both had to be cancelled as I caught infections in the run up to the transplant and all the surgeries in the chain had to be cancelled. I felt guilty as this meant the others in the chain missed out on their transplants too.

We matched for a third time in December 2021 and this time we went ahead. I received my transplant, and my husband donated his kidney three days later.

The transplant was successful and there were no complications with the kidney at all but there were some other complications. Part of my bowel had to be removed during the surgery and I was taken for emergency surgery around 2 weeks later to repair the damage and to give me a stoma. After this surgery, I was put into an induced coma and kept in the intensive care unit. I was completely helpless. After being bedridden for such a long time, I had to learn to move and walk all over again. The stoma was overactive, and I had a really hard time coping with it. After everything I have experienced, this was the worst experience of my life. As this all happened during the COVID-19 pandemic, it was hard for my family to get updates from the doctors and nurses, so they didn’t know what was going on a lot of the time and while I was in the high dependency ward, I wasn’t allowed any visitors. It was only in the general renal ward that my daughter was allowed to visit, but I was there for just three days before catching COVID-19 and moving to a COVID-19 ward.

I finally had a successful stoma reversal surgery in June 2022 and came home just a few days later. I’m still getting back to normal but I’m doing really well and still under the brilliant care of the Hammersmith Renal Team.

As kidney patients, we all go through extremely difficult times. My faith in God has helped me to be strong and my family’s support was very helpful. My advice to others would be to not think about what has already happened in the past and to look forward to the future.

On 23rd April 2023 I celebrated my 65th birthday with family and friends and I asked for them to kindly donate to the National Kidney Federation in support of their patient support services. We passed our fundraising target of £1,000 and I very much enjoyed the day celebrating. My kidney failure history spans over 30 years and I hope my story is encouraging for people going through difficult times.”