Fellow kidney patients gave me the strength to carry on after devastating diagnosis
A visit to the GP in 2023 suddenly turned into a nightmare for 39-year-old Swaroop Kadambari, when he was rushed to A&E and told that his kidneys had failed.
In just one day, kidney disease had torn his life apart, leaving him needing relentless dialysis treatment and feeling fearful about his future.
Swaroop, a financial services lawyer from Croydon, says: “The doctors were very clinical in delivering the news, without much empathy for what it meant for my life. It felt catastrophic and I didn’t know where to turn with all the questions I had. I was so scared about the impact on my family, career and other aspects of my life.
“Beginning dialysis was terrifying, but I was uplifted by the kindness of fellow patients in the unit who remained positive in the face of treatment. They understood how I felt and have helped me navigate life with kidney disease. Seeing them living meaningful lives on dialysis and post-transplant has given me a lot of strength. Peer support is so valuable.”
Swaroop’s belief that all kidney patients should have the opportunity to benefit from the experiences of others is the inspiration behind his decision to develop an app providing a supportive environment to connect kidney patients.
Sudden kidney failure
The first signs of Swaroop’s kidney disease appeared in April 2023, when he became extremely tired and began shivering with flu-like symptoms.
Swaroop says: “I regularly fell asleep on the sofa and felt grumpy. My wife was getting frustrated because she thought I was being antisocial, but I couldn’t keep my eyes open. I just attributed it to having a busy job and three young children.
“I was never usually unwell, so I continued working and going to the gym thinking it would pass. I was only 37 and it didn’t occur to me that it could be something serious. However, it kept getting worse and my face became puffy. I now know that was fluid build-up caused by my kidneys failing.
“I visited my GP, where I had a blood test, and just a few hours later I was told I urgently needed to go to A&E. I was rushed to Kings College Hospital and diagnosed with a rare autoimmune condition called Goodpasture’s disease.
“I spent six weeks in hospital receiving plasma treatment – to rid my body of the antibodies which were attacking my kidneys – and having dialysis to perform the job of my kidneys. I thought I’d be fine, but a biopsy found my kidneys were damaged beyond repair. When I left hospital, I was transferred to a local dialysis unit to continue treatment indefinitely, three days a week, for four hours each time.”
Support on dialysis
Dialysis only performs about 10% of the work that healthy kidneys do but is essential to keep patients with kidney failure alive in the absence of a kidney transplant.
Swaroop says: “Dialysis was very difficult. It was exhausting and I struggled with fluid restrictions. I was no longer the fit and strong person that I was before. My body and complexion completely changed, and the central line I needed for dialysis protruded from my chest. When I looked in the mirror I broke down in tears.
“Nobody wants to be unwell. I hated feeling fragile and in need of help. I was very conscious that my central line was visible through my clothing and that made it harder to enjoy events like weddings.
“I was not able to be as active as I had been and that had a huge impact on my mental health. It was harder to do things I enjoy, like playing with my children, martial arts and running. It caused me to become very anxious and depressed.
“I am so thankful for the kindness of others which kept me going. Patients in the dialysis unit helped me manage day-to-day by giving me tips on things like what to eat, or how to keep my central line dry when washing. Hearing it was possible to go on holiday was crucial for my wellbeing. It helped our family take a trip to Center Parcs, giving us a bit of freedom when we had very little. The sense of community was overwhelming, and we had great support from family friends too.
“My wife, Tanya, has been there for me through everything and learnt home dialysis to help me continue working. Although the machine took up a lot of space in our house, it prevented me having to visit the dialysis unit three times a week.
“Having treatment at home forced us to pause our hectic lives and brought us closer, although it was isolating losing connection to the other patients in the dialysis unit.”
Receiving a transplant
It was Tanya who donated a kidney to Swaroop in May 2024 after test results showed she was compatible donor.
Swaroop says: “We were unsure if Tanya would be a match because she does not share my Asian ethnicity, but amazingly she was! It was scary going through surgery when we have children, and it was such a relief that we were okay. Waking up after the transplant was the most euphoric feeling I’ve ever had.
“I had so much more energy and couldn’t sleep because I was so excited. I never thought I’d be so happy to be able to drink lots of water and urinate again. Within a couple of months, I was back at work and exercising. To be able to fully engage with my children’s lives and make memories as a family again has been amazing.
“Transplants don’t last forever, but I’m trying to take care of myself and enjoy it. Being ill really motivates you to do those things you say you’ll do tomorrow, because you realise tomorrow isn’t guaranteed.”
Peer Pals
Swaroop hopes that his app – which he has called Peer Pals – will replicate the supportive environment of a dialysis unit online.
Swaroop says: “Having kidney disease has opened my eyes to how kind people can be and that is one of the biggest positives that has come from my experience. That’s why I’ve created Peer Pals to provide support at all stages of kidney disease.
“Friends and family are a great source of strength, but sometimes it can be helpful to speak with other kidney patients who better understand the challenges you face. Peer Pals includes a discussion forum where patients can connect and ask questions to learn from each other’s experiences. Talking to people going through the same things can feel like having a weight lifted.
“There is also a news feed which displays lifestyle tips and research developments to give people hope. Links are featured on the app to charities like Kidney Research UK, where people can find additional information and resources.
“I feel blessed to have my kidney and want to do everything I can to help other people through some of the most difficult times of their lives.”
Read more news
New results show Kidney BEAM physical activity digital health programme improves mental health and self-management in people living with polycystic kidney disease
Investigating how problems with memory and other thought processes might affect treatment-related decision-making in patients with CKD
Understanding the impact on mental health where there is a negative outcome following a kidney transplant
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