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Sara’s Story

"My son’s transplant has given the whole family a new lease of life."

Image of living kidney donor Sara with her son Joseph, who she donated a kidney to, and her husband. The family are attending a wedding, and Sara is holding a colourful bouquet of flowers.
Living kidney recipient Joseph sitting in front of a Christmas tree. He is facing away to the right but is turning towards the camera, a large grin on his face.

Sara’s son Joseph was diagnosed with focal segmental glomerulosclerosis (FSGS), a rare condition which caused nephrotic syndrome. Dialysis was necessary to keep Joseph alive as he waited to receive his new kidney.

The donation process was physically and emotionally challenging for the whole family. Joseph’s father, Matt, was ruled out as a suitable donor by doctors but fortunately Sara was a match. Despite this, in March 2022, surgery was cancelled the night before it was scheduled to take place due to blood test results. 

A few weeks later, Sara and Joseph received a new date for their surgery to take place in June 2022. Sara says: “We had a mixture of emotions getting the call, both apprehensive and excited for a new chapter for Joseph.” 

Ups and downs post-transplant

Thankfully, this time the transplant went ahead and was successful. Sara says: “His new kidney started working straight away. If anything, it worked too well! He was weeing such huge amounts of urine that the doctors had to replace lots of the essentials such as magnesium and potassium for the first few days.” 

A week later, Joseph experienced a reoccurrence of FSGS which meant he needed plasma exchanges and rituximab infusions over the following months. Sara says: “This was really deflating for us all. We had been warned this might happen but assumed it’d be right away and so we had thought we were out of the woods. We’re so grateful the treatment worked, and we’re now over a year without reoccurrence.” 

Living kidney donor Sara with her son Joseph, who she donated a kidney to. they are sitting on a blanket at the beach, smiling towards the camera.

Joseph is very proud of his new kidney

Joseph’s transplant had a transformative effect for the whole family. Sara says: “It’s given us a better lease of life. We’re now able to go away and enjoy going swimming together which is something we couldn’t do before.” 

“Joseph is very proud of his kidney scar and tells people openly he has a new kidney. Luckily, I’m not sure he remembers too much of the operation or the month he spent in hospital recovering.” 

The family are now able to look forward to Christmas without the need for dialysis, where Joseph can enjoy a Christmas dinner without having to worry about restrictions on fluid and food. Sara says: “We’re so grateful for the second lease of life Joseph’s been able to have.”

Transform treatments for children like Joseph

The reality of current treatments for kidney disease is tough. Sara says: “My heart goes out to anyone going through similar things. I really hope those waiting for transplants get it soon. It’s not an easy treatment as there are still so many ups and downs post-transplant, but it’s so worth it compared to the restrictions of dialysis.”

 

Sara is also a Buddy in the UK Living Kidney Donation Buddy Support Service. Visit our webpage on the service if you would like to speak to her, or someone else who has experience in living kidney donation.

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