'Organ transplant saved my life' - back to being Kirsty

Kirsty is one of about 46 people in Suffolk who had deceased donor transplants in 2020/21 and there are currently about 33 people in the county awaiting this life-saving or life-improving gift, as at the end of October 2021.

Ahead of the first anniversary of her operation in January, she shared her story with us.

'It was a real shock'

The 40-year-old, from Clare, near Sudbury and Bury St Edmunds, was in her mid-30s when she received a "completely out-of-the-blue" diagnosis of kidney disease.

She had lived an active lifestyle, playing regional rugby and local football, and also works in sport for the national charity Activity Alliance.

Kirsty Clarke works for a disability sports charity and said her life revolved around sport, but kidney disease meant she had to stop playing (Image: Contributed)

She had been suffering with tiredness that she felt she couldn't shake off and was diagnosed with anaemia, but doctors wanted to do further tests.

She was told "your results are not great".

"It was a real shock," said Kirsty, who is married to Holly Ambrose. "The GPs had addressed the anaemia, but wanted to send me to the renal department at the hospital for further investigation."

She was diagnosed with a type of kidney disease called IgA nephropathy, also known as Berger's disease, but still does not know how she got it.

"I suddenly went on a huge educational journey on what kidney disease meant," she said. "And everyone has a different journey or reason or diagnosis behind their kidney disease. There are so many different causes for kidney disease."

'The disease took me away from me'

Her kidney function was about 40%, she said, but as the illness progressed it deteriorated and "things were not in a good way".

She said it got to the point "where you start to feel everything is incredibly hard".

Kirsty Clarke with her dog Joey (Image: Kirsty Clarke)

"Fatigue would set in," she said. "I was trying my hardest to function. I could probably do a day's work and that was it. It got to 5.30pm and I would then need to sleep."

She added: "The disease just took me away from me."

Sport, which she had lived her life around, came to a complete stop, which she also found incredibly tough.

"It is tough, but you find your way through it," she said. "And there's the hope there is a transplant out there for you."

'I'm hugely grateful'

Kirsty had her transplant operation at Addenbrooke's Hospital, Cambridge, in January 2021 after being on the list for a couple of months.

She got the call over the festive period to say a donor had been found.

Kirsty Clarke with her mum (Image: Kirsty Clarke)

She said she knew in the few years before the transplant she was "at the point of no return," but you are not put on the list until your kidney function is quite low.

Getting over the surgery was "tough" and the kidney "didn't quite kick in" to start with, but she is now living a life as full as she can.

"I'm hugely grateful for it being me," said Kirsty, who recognises her transplant operation saved her life.

"I have tried to do everything I can to get me back even within the restrictions of the last year and however long."

She said it was hard to describe "how quickly you feel a better person'".

She said what probably hit her the most was her improved brain function, as before she as getting "brain fog" and found it difficult to articulate things.

"I feel beyond fortunate," she added. "The kidney is functioning really well."

She has never had dialysis but she is on medication - "a small price to pay," she said.

'It's finding that balance'

Kirsty's organ is from an deceased donor, whose identity she does not know, and she said so much of her happiness and her life could be thanks to a conversation the person had with their family about organ donation before they died.

"I'm just incredibly thankful that in their moment of absolute grief they somehow recognised it would be life changing for someone else in a very positive way," she said. "I will never stop being thankful for that."

She spoke of finding the balance between looking after the gifted organ and living life to the full.

She added: "It's difficult when you receive a transplant, whether from a living or deceased donor. You feel you have got to be a good transplant recipient.

"You feel 'oh gosh, I have been given the gift of life'. You have to look after it and you have got a life to live. You have got to do this new organ justice."

There are still some limitations to what Kirsty can do, but she has been able to get back to her career and sport, although not rugby.

She has started walking football, golf, tennis and badminton and is hoping to get involved with the British Transplant Games.

She added while she feels so well, she also recognises how vulnerable she is - and must be careful not to get Covid.

A big birthday celebration is on the cards for an unknown date in the future as Kirsty's 40th fell in January 2021, but she said she will just have to stay in her 30s even longer.

'We need families to talk about organ donation'

NHS Blood and Transplant [NHSBT] has been calling on families in Suffolk to talk about organ donation and register their decision to help save lives.

Anthony Clarkson, director of organ and tissue donation and transplantation at NHSBT, said many thousands of people across the country had been able to enjoy a happy and healthy Christmas "thanks to the generosity of a donor and their family who so selflessly chose to give the gift of life".

"However, there are still thousands of people who are still desperately hoping and waiting for the transplant that will transform their life," he said.

He urged people to let their family know their organ donation decision as those conversations could help save the lives of those currently waiting for a transplant.

Even though the law around organ donation has now moved to an opt out system across England, Wales, and Scotland, many are still not aware that families will still always be consulted before organ donation goes ahead.

For more information, or to register your organ donation decision, please visit the website or call 0300 123 23 23.