My son Joseph is still waiting for a transplant Blog post by Sara Turkentine
I recently wrote to supporters of Kidney Research UK and shared my family’s story. I’m Sara, and my husband’s name is Matt. If you received the letter with our story in, you might remember that we were getting ready for our three-year-old, Joseph, to have his first kidney transplant operation – I’m donating one of my kidneys to him. I wanted to get in touch with you personally, just to update you on what has happened since.
Things didn’t exactly go to plan…
We had a transplant date set for 8 March. Preparations began many weeks beforehand. We’d booked a place for Matt and my mum to stay nearby, so they could look after me and Joseph while we were both in hospital. We’d arranged for Matt’s parents to come and look after our six-year-old daughter Annabelle while we were away. And we’d planned playdates and a series of presents for Annabelle in the hope that it might distract her from worrying about her little brother’s surgery too much. We’d spoken with Annabelle’s school to let them know what was going on so they could be prepared for any extra support she might need. We’d all self-isolated for a week beforehand to avoid the risk of picking up Covid-19 or any other bugs that might mean the operation got cancelled, and we’d worked from home the week before that just to make doubly sure. Matt and I had both arranged to be away from work for a few weeks, and done handovers with colleagues, so everything could continue smoothly while we were away. In terms of organising everything, we were set.
Physical and mental preparations
But alongside the physical preparations that we had to do, the biggest thing for me and Matt was the mental preparation for it all. There was a lot of stress and anxiety in the run-up to the big day. So much uncertainty. It’s a difficult thing to get ready for emotionally. A transplant is a big surgery. And Joseph is so little!
Joseph had all his pre-op tests 10 days beforehand, and he passed them all. We travelled to Nottingham the day before – Matt went with Joseph to one hospital to get him checked in and ready, and I waited at the rented place, ready to go to the other hospital first thing in the morning. But then suddenly at 9:30pm the night before the operation, the consultant called me and said,
“I’m sorry, we can’t go ahead.”
One of Joseph’s blood tests that day showed that his “liver function enzyme” was slightly elevated. Which might mean that there was an underlying infection brewing. Given that Joseph would have to be on some heavy immunosuppressant medications after his operation, they couldn’t take the risk.
After the long and emotional build-up to the day of the surgery, Matt and I were so disappointed. Devastated really. But in a strange way we were also relieved, because we’d both been so worried about Joseph having this major surgery. We’d both had terrible headaches on the day before the surgery was supposed to happen because we worried so much. And suddenly they disappeared. It was like a rope had been pulled more and more taught for months leading up to the surgery, and then someone snipped it, and everything was released in a moment.
The planning begins again
Now we begin the planning process all over again, and we’ll face the build up and emotional worry again. We’re not sure when the operations will happen now. Joseph will have to stay on dialysis a while longer. It can take months for liver function enzymes to come back down, and then there’s a huge number of things that need to be co-ordinated between the two hospitals where my surgery and Joseph’s surgery will take place – two sets of surgeons, anaesthetists, care teams etc
So we’ll just wait and hope, but not get our hopes too high until Joseph and I are actually in the operating theatres. But even then, there’s so much that can go wrong after a transplant surgery – like what if Joseph’s body rejects my kidney? What if he picks up another infection while he’s immunosuppressed?
Why we support research
Living with kidney disease means living with uncertainty. That’s why Matt and I support Kidney Research UK, like you. Because helping make more research happen means we’re doing something positive to benefit not just Joseph’s future, but the futures of everyone living with kidney disease, and everyone who will go on to develop kidney disease – because it can happen to any of us.
Read more about people living with kidney disease
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