25/09/2025
Carole's story (posted with consent for
You don’t expect to take your previously healthy 16-year-old son to see the GP as he’d been feeling under the weather to be told he was in end stage renal failure. This happened to our son Jonathan in October 2008.
He had just finished his final year in Secondary School and was a few weeks into his chosen course at college when this devastating news turned his life upside down and changed forever.
Weeks in hospital ensued trying to find the cause as there was nothing obvious whilst waiting for his blood pressure to reduce to a safe level for a biopsy to be performed in the hope of shedding some light.
To everyone’s shock it was discovered that Lupus was the culprit, not something that had even considered for a red headed 16-year-old male. We were absolutely devastated.
By this stage dialysis was urgently needed and after discussion with the medical team, Jonathan and we as his parents agreed to Peritoneal. This decision would allow him to attend college as normal during the day, be with his friends and live his life as he would dialyse at home overnight.
As Jonathan’s parents there was no hesitation when the possibility of a living donation was discussed.
We understood that this was the gold standard way to donate, giving the best chance of a positive and long-term healthy outcome for the recipient. This was all we could hope for in the desperate desire to help our son.
There’s nothing harder than seeing your child desperately poorly and feeling so helpless, being tested for compatibility was a no brainer for us both. After a simple blood test for myself and Jonathan’s dad Sean, we discovered that we were both a near perfect match, happy days!!
After much deliberation it was decided that Sean should be the one to forge ahead with the more invasive testing as I had a medical history that could have been a stumbling block for me to donate and we did not want to waste time for Jonathan’s sake.
After 16 months of dialysis for Jonathan, getting him well enough for the operation and the work up for Sean, the transplant finally happened in March 2010 and was a resounding success.
Sean’s recovery was good, and Jonathan’s new kidney was working brilliantly from day one.
With his new lease of live provided by his dad, Jonathan lived life to the full.
There were ups and downs for us as a family dealing with the worry and practicalities of post-transplant life but after a period of adjustment it became easier, especially for Jonathan.
Unfortunately, in 2024 Jonathan’s transplant from his dad failed after 14 years and after a few close calls and serious heath scares he had to go on haemodialysis in November 2024. A temporary line was inserted in his neck to accommodate this in the hope of a positive outcome with my work up.
Just because your child is now an adult doesn’t change the way you feel and worry as a parent.
Witnessing the devastation and life-threatening challenges that renal failure brings to them for a second time and feeling helpless once again does not get any easier.
Knowing I was already a blood match from our initial testing back in 2008 there was again no hesitation from me to put myself forward in the hope of Live Donation once again for him.
Jonathan was not very receptive to the idea of his mum going through the process at first.
He was very anxious and worried about the possibility of anything happening to me during the operation especially with my past medical history.
After lots of reassuring chats with family and his fantastic renal team at Salford he agreed to me starting the work up process and we would take it from there knowing that they would only let it happen if it was safe for us both.
The work up was straightforward, and I was kept informed every step of the way.
After receiving the positive news that I had been given the green light to go ahead, Jonathan and myself finally underwent the operation in May 2025.
