"Within both the Jain and Hindu faiths, benevolence to others is supposed to be a key principle."
Prafula Shah’s niece Shakti was born with only one kidney, which did not function at full capacity. Her family was told that at some point during her childhood she would need medical intervention in the form of dialysis or a transplant – and when her kidney function finally declined two decades later, Prafula had no hesitation in putting herself forward as a living donor.
Although she was not a direct match for her niece, Prafula was able to donate via the Kidney Sharing Scheme, and is now determined to spread the word about living donation.
Communications consultant Prafula, who lives in London, says, “Shakti was so well looked after by her mother in terms of her diet, and had such great care from Great Ormond Street and the Royal Free hospitals that she was 24 years old when her kidney function finally declined to six per cent. That was when we knew some action had to be taken.”
“A lot of people in this situation are reluctant to ask friends and family to do any testing, and Shakti was the same. She didn’t push us to take the tests to see if we were a match for her, but we all did. Sadly, there was only one match but they weren’t able to take it forward.”
Shakti was facing an uncertain future on dialysis while waiting for a deceased donor kidney to become available. But Prafula was determined to do something more to help. The Royal Free told them about the UK Living Kidney Sharing Scheme, a matched donation scheme where people offer a kidney to someone else in return for another living donor providing a kidney for their family member.
She says, “I talked to Shakti about it, and we decided it would be a good option. I put myself forward and had lots of tests – blood tests, X-rays, an ultrasound of my kidney – basically a full body MOT to make sure I was fit enough to go through with an operation.”
The matching scheme operates across the UK and matching runs are undertaken four times a year. Shakti and Prafula joined the scheme and a match was found in the first run in January 2018. In the meantime, Shakti had trained to do home dialysis, but in the end, she did not need to start treatment, as luckily a match was found straightaway.
Prafula says, “Before the operation, Shakti was very humbled and grateful about what I was going to do for her, but naturally she was also concerned about me. Everyone in the family was supportive, but of course there was worry. My mum was particularly concerned. But we are a really open family and had a lot of conversations which I think is really important.
“It was a strange feeling, knowing I was going to have an operation even though I was perfectly well. But I was just so pleased that not only had a match been found for Shakti, but that someone else was also going to get the kidney they needed from me.”
The operations took place at the Royal Free Hospital in March 2018, and in the end both women recovered well and were back at work within eight weeks of surgery.
“I’ll never forget when I came to and asked how Shakti was, and they told me the kidney was working within 30 seconds of the transplant. And the other fantastic news was that my donor kidney was also working well! We were both at home afterwards feeling quite sick, but both feeling that something really quite miraculous had happened.
“Now I feel so well, it’s sometimes hard to believe I’ve even lost a kidney. My body functions perfectly well on just one.”
Now Shakti is also thriving, and Prafula takes great pride in seeing her enjoying her job as a senior policy officer. She’s also passionate about spreading the word about living donations and is part of the Jain and Hindu Organ Donation Alliance – a charity which raises awareness of organ donation specifically in South Asian communities.
“I’ve had an amazing reception wherever I’ve spoken,” she says. “People always want to hear our story. They often want to know if our faith allows it, and I tell them that within both the Jain and Hindu faiths benevolence to others is supposed to be a key principle. And, what could be a greater act of benevolence than transforming someone’s life by giving them part of yourself?”
Prafula says that one of the main things that puts people off from becoming living donors is fear that losing a kidney could affect their health in the future. She supports the work charities do in helping people understand they can live full lives with just one kidney, and thinks that people who have had a lived experience telling others is the perfect way to spread the word about becoming a living donor.
She adds, “At the moment, there are more people waiting for kidneys than for any other organ. If anyone is considering becoming a living donor, my advice is to talk the whole process through beforehand. Talk to someone like me, or the living donor co-ordinator at your local transplant centre. Consider what the person you may do this for is going through. What will their life be like if you don’t do this?
“By donating a kidney you are going to transform their life. You’ll be able to see the good you can do.”
"It has now been over a year since my donation. I have zero pain or discomfort, and I am entirely back to normal with nothing but a scar to remind me of my experience."
ReadRachel already knew more than she wanted to about the process of kidney donation before she gave her spare kidney to someone she didn’t know.
ReadHenry donated a kidney to his sister Helen, and has seen first-hand the difference a donation can make for someone with kidney disease.
Read“It has made absolutely no difference to my day-to-day life. My mum, however, has a life like never before.”
ReadNaomi knew she wanted to donate a kidney after learning about kidney disease and reality of life on dialysis.
ReadEmma donated her kidney to a stranger eight years ago after first seeing a story about non-directed donation on TV four years previously.
ReadJoyce thought that she was too old to donate a kidney, before learning there was no upper age limit for donating.
ReadMandy donated one of her kidneys to her younger cousin Lou, who was diagnosed with kidney problems when she was two years old.
Read"I don’t consider myself to be a hero or brave. I just did what I was brought up to do – to help others."
ReadJulie worked hard to stay fit and healthy while she was preparing to donate a kidney to her nephew.
Read"At the beginning it seemed like a difficult decision to make, but since the operation I don’t have any regrets."
ReadTessa believes that donating a kidney to a stranger is one of the best decisions she's ever made.
ReadLynn was 75 when she donated a kidney altruistically. "I knew I wanted to do it if I was capable of doing so."
Read“You don’t need to be a superhero, you don’t need to be a mega star of any sort. It’s something that normal people just like me can do."
ReadLaura knew she would donate a kidney to her sister if she needed it. When the time came, she found the process absolutely worth it.
ReadMatt's dream of joining the police was shattered by an unexpected diagnosis of kidney disease, but his mother's kidney donation allowed him to thrive and pursue new dreams.
Read"I've learnt a lot about myself and my own health – I would do it again in a heartbeat (if I had another kidney to spare!)"
Read"I believe that if you are in a position to help someone else less fortunate than yourself, then you should do so."
ReadEvery kidneyversary deserves a celebration, but in 2024 Elaine marked a particularly poignant milestone – 10 years since she donated a kidney to her eldest daughter.
Read"I feel immeasurably better in myself knowing I have been able to give my brother the gift of a healthy life."
ReadDennis is keen to show people that you can still live your life as normal and achieve great things after donating a kidney.
ReadWhen Ali heard that a former colleague was waiting for a kidney transplant, he knew within minutes that he would offer one of his.
Read"My mum needed a kidney, and I didn’t need both of mine. When I heard that, I didn't have any hesitation."
ReadKathryn faced life-changing kidney failure after being diagnosed with the rare disease, IgA vasculitis.
ReadMarianne has seen first hand the benefits that kidney donation can bring to a family, and feels blessed that she was able to donate a kidney to her brother.
ReadBen felt drained by kidney disease for over 12 years before his cousin gave him a second chance at life by donating his kidney.
ReadJulie donated to her son and knows first hand that donating an organ doesn’t just save a person. It saves a family.
ReadAnne donated into the UK Living Kidney Sharing Scheme so that her brother could receive a kidney transplant.
Read"If I had more Kidneys to give, I'd be donating to anyone who needed one."
ReadTrainee teacher Mark is grateful for the life-saving kidney transplant from his brother that put him back on track for life and his career.
ReadSheldon & Hayley watched their daughter Daisy-May go from a shock diagnosis of kidney failure to dialysis, then transplant, in an emotional rollercoaster lasting 16 months.
ReadMy donor gave me a life to live for. I have done things I had never considered doing whilst on dialysis.
Read"If I had another kidney to spare, I would donate in a heartbeat. It was life changing for my husband, and for me as a person."
ReadDavid is just an average Joe. A motorcycling, 54-year-old father and grandfather. And 6 years ago, he donated one of his kidneys to someone who needed it more than he did.
Read40 years ago, Kathleen donated one of her kidneys to Cheryl, who was just five years old at the time.
Read"Giving a small part of me that I didn’t need to someone else would make little difference in my life, but a huge difference in theirs – it was an easy decision for me to make."
ReadLiz's family struggled at first with her determination to donate her kidney to someone unrelated to her.
Read"I donated a kidney to my dad 10 years ago, aged 25. To me, it was a no brainer."
ReadSarah had seen the life-changing difference donating a kidney could have, and immediately knew it was something she wanted to do.
ReadI would not feel as comfortable in my own skin as I do now if I had not donated my kidney.
ReadPete’s kidney gave me my life back and gave my son Edward a mum with energy and vitality.
ReadWhether you’ve already decided to donate a kidney, or you are interested in finding out more about the process and what it involves, we’re here to answer any questions you might have.
