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Family bond even stronger through kidney sharing scheme

28 April 2022

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.  

Prafula Shah and niece Shakti
Prafula Shah and niece Shakti

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.” 

An uncertain future on dialysis

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 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.” 

Kidney Sharing Scheme

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.”

Prafula Shah meeting Sadiq Khan
Prafula Shah meeting Sadiq Khan

Helping to spread the word

Now Shakti is also thriving, and Prafula takes great pride in seeing her enjoying her job as a policy officer. She’s also passionate about spreading the word about living donations and is part of the Jain and Hindu Organ Donation Steering Group.

“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 Kidney Research UK do in helping people understand they can live full lives with just one kidney, and thinks that Organ Donation Week is the perfect time 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.”

Read more about people living with kidney disease

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