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James & Claire’s Story

Claire and I first met at school over 20 years ago when we were both teenagers. We grew up together, lived together, and got married – all whilst Claire suffered from kidney disease. She had a kidney disease from birth – her dad, aunt and grandad all had the same condition. She wasn’t at a stage where she needed dialysis, but was deteriorating over time. She was used to living with it, but she definitely suffered from extreme tiredness. 

We always wanted children, so we spoke to her doctor about our options. They told us that her kidneys weren’t so bad as to stop us from attempting, but we most likely would never conceive.  

After 2 years of planning with a “Pregnancy with Chronic disease” specialist in Newcastle, we were delighted to beat the odds and fall pregnant.  

At 24 weeks, Claires doctor said her kidneys were struggling, so she was admitted to Newcastle (we lived near York) to be on dialysis 6 days a week for the remainder of the pregnancy. 

After 10 weeks of me staying in York during the week and seeing Claire on the weekend (Claire stayed in the hospital under the care of the specialist), our Daughter, Leala, was born and spent a few days in NICU due to being premature. A week later we were home, but found that out our daughter also had the same kidney disease as Claire. Claire came off dialysis, but she went back to her usual exhausted self.  

2 years after Leala’s birth, we were told by the specialist we shouldn’t plan for any more children until after a transplant, as Claire’s kidneys had continued to deteriorate. A few years after that, Claire was pre-emptively put on the transplant list, which is where she stayed for 4 years. 

During this time, her mum went through all the tests to donate a kidney to Claire, but ultimately was declined due to a small heart issue. After a discussion with Claire, I commenced tests to donate (Claire initially didn’t want me to in case our daughter needed a kidney in the future). 

We were tested. I wasn’t a direct match for Claire, but we were told that I could donate to someone else so that Claire could receive someone else’s kidney, as part of the UK Living Kidney Sharing Scheme. 

After a number of matching cycles, in 2019 I donated my Kidney in a three-way swap with someone else across the country. Claire received her Kidney the same day.  I was home the next day, but Claire stayed in for another week to make sure she recovered fully.  

Claire’s new kidney was doing really well for a couple of years, so we decided to speak to the doctors again about having another child (the mothering instinct could not be ignored by Claire!). In March 2022, our son Lincoln was born after a much simpler pregnancy. We named him Lincoln partly due to the fact the Lincoln Wing in Leeds is where we had our transplants. We simply wouldn’t have had him without the staff there. 

Unfortunately, Lincoln has also been diagnosed with the same disease, however (as with our daughter) it is kept at bay with medication for now. 

Claire has gone from strength to strength, and is currently undergoing a teaching qualification to become a college lecturer. Our daughter starts high school this September, and our son has just turned two. 

Considering the challenges she faced through her life, Claire has been my rock. She has an understated strength and just gets on with things. There were times we were going to give up having kids, but I’m so glad that we didn’t. I am very lucky to be able to see first-hand the impact living donation has on a life. 

The only negative points from donation is that I now have to make sure that I drink enough on a daily basis, or else I do feel a bit tired.  but this is good practice anyway. I also feel the cold a bit more than I used to. An extra jumper sorts that out. In the grand scheme of things, the impact on me has been minimal, but the impact on Claire is immeasurable. 

I’ve said a number of times to Claire that if I had more Kidneys to give, I’d be donating to anyone who needed one. The whole process was simple, straight forward, and has had very little long-term impact on me. I still go to the Gym every day, I’m as fit as I’ve ever been, and I go to sleep knowing the mother of my children is no longer suffering on a daily basis. 

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