'Family complete' after braving a three-way kidney 'swap shop'

A Yorkshire couple say they have 'completed their family' following the selfless act from a "heroic" donor to undergo a three-way kidney share.

Claire Collins, 36, a self-employed hairdresser, was born with a rare form of kidney disease, a hereditary condition called familial juvenile hyperuricemic nephropathy, and has faced a “slow deterioration” in her health since birth.

She started taking medication from the age of two, she was on a “special diet” for nearly two decades and was “stick thin” – she could not eat chips, pizza, bananas or chocolate, or drink alcohol – and she would go to bed no later than 7pm every evening due to extreme fatigue.

READ MORE: Girl killed in Bradford house fire named locally as people pay tribute

She put on a “brave face for everybody”, but her condition gave her a “daily reminder that she was different”. After marrying her husband James, 40, an engineering consultant, in 2010, the couple, who live just outside of York, started talking about wanting a family, but a renal consultant told them the chances of conceiving were “extremely slim”.

However, Claire successfully fell pregnant and, despite needing dialysis almost daily for nine weeks in hospital, gave birth to their first child Leala in 2012. They were then told Claire would need a kidney transplant before they could consider having a second child – and after years on a waiting list, they decided to join the UK Living Kidney Sharing Scheme, where donor kidneys can be exchanged or swapped.

In the spring of 2019, an altruistic donor came forward and this allowed them to complete a three-way swap, where Claire received a kidney from a stranger and James donated his kidney to another stranger.

Post-surgery, James said he has seen the “living proof” of what a kidney transplant can do, as it has given Claire a “new lease of life” and allowed them to have a second child, called Lincoln, and spend quality time together as a couple. James told PA Real Life: “Whoever donated that kidney has completed our family because we were able to have our son and I was able to have a wife that I probably wouldn’t have had without it.

“Since I’ve donated, I genuinely mean it when I say, if I had more kidneys I’d give them to anybody who needs them because the impact on me has been so minimal compared to the positive impact that I’ve seen in Claire. ”

Claire added: “I’m just able to do so much more than what I could ever have dreamed of. It has given us that family unit – we’re a unit now, we’re equal.”

Claire and James are “childhood sweethearts” and met as teenagers in secondary school. They moved in together in 2007, got married in 2010, and subsequently discussed the prospect of having children – but were initially told by a renal consultant: “The likelihood of you conceiving is extremely slim, never mind carrying a pregnancy.”

After contacting another consultant at the Royal Victoria Infirmary (RVI) in Newcastle, however, Claire fell pregnant in early 2012. But due to her kidney disease, at 24 weeks gestation she was called to the RVI and remained there as an inpatient for the following 10 weeks.

She said: “They told us in the beginning there was a big chance that I would need dialysis through the pregnancy – and it had come to that point. That day, they said: ‘We’re going to put you on dialysis for two hours, see how you go, and if the baby’s not happy, the baby comes out tonight’.”

Claire responded well to the treatment and subsequently received dialysis – which she described as a “washing machine” that filtrates toxins out of the blood – for four to five hours every day, six days a week, across nine weeks in total. Leala was then born on October 16 2012, but just one week after bringing her home, they received the devastating news that she had kidney disease as well.

Claire’s kidney function soon returned to pre-pregnancy levels and she did not need to continue with dialysis – but as her health continued to deteriorate, this raised questions about trying for another baby. “About two years later, we decided to go back to the RVI and said, ‘We’ve done it once, what do you think about us doing it again?'” James said. We wanted a family, we wanted another child, but they said: ‘Don’t even think about it’.”

The couple were advised by doctors that they should not plan for any more children until Claire underwent a kidney transplant, and she was placed on the waiting list. Four years later, after learning both Claire’s mother and James were not direct matches for a transplant, the couple made the decision to join the UK Living Kidney Sharing Scheme.

They waited for a phone call for 18 months, but nothing materialised until early 2019 when an altruistic donor came forward – and this one person changed two people’s lives by allowing for a “three-way swap”.

In the spring of 2019, after undergoing copious tests and examinations, James had his left kidney removed via keyhole surgery, which was donated to a stranger, while Claire received an altruistic donor’s kidney on the same day at St James’s University Hospital in Leeds.

“They basically disconnect the kidney inside you, pop it in a jiffy bag inside you, make the incision and then pull it out and it’s ready,” Claire said.

The couple described the scheme as a “swap shop” – and now, five years on from the surgeries, Claire is able to live a “relatively normal life”. She can watch TV late in the evenings with James, go out with friends, and travel abroad, and she has “plenty of energy” to enjoy time with the children. It was unbelievable, and I thought, this is what it’s like to be well,” Claire said.

“It’s mind-boggling to have spent years feeling unwell and not knowing what normal was and then be given a function that is viable.” On the impact it has had on James, he added: “I have to drink more water now but I’m going to the gym, playing sports, riding my bike, and most days I completely forget that I’ve only got one kidney. I don’t know the details of where my kidney went, but I just hope that whoever has it is living the life that Claire’s currently living.”

Post-transplant, Claire fell pregnant and gave birth to their son Lincoln – named after the Lincoln Wing at St James’s in Leeds – via a planned C-section on March 17 2022. Lincoln has been diagnosed with the same kidney disease as Claire and Leala, and both children are currently under a renal specialist.

The couple have check-ups regularly, with Claire describing James’ appointments as him “having an MOT once a year”, and they both have a newfound appreciation for the simple things in life. They said the NHS has been “absolutely brilliant” throughout and they described altruistic donors as heroes – and while they know the “longevity of the transplant isn’t forever”, James likened Claire’s transformation to “night and day”.

Now they want to raise more awareness about kidney donations and the Make Your Mark campaign, which has been launched by the charities Kidney Research UK and Give a Kidney to help more people understand what it means to be a living donor.

“It has taken a few years to process everything and actually be able to talk about it, but now we want to help people who are thinking about donating,” James said. “Hopefully, if we can help one person decide to donate a kidney, then it’s all been worthwhile.”

To find out more about becoming a living kidney donor, click here. To find out more about the UK Living Kidney Sharing Scheme, click here.

Get all the latest and breaking Yorkshire news straight to your inbox by signing up to our daily newsletter here.