Marilyse’s Story

I was with my childen’s dad Sean for about eight years. He lives with polycystic kidney disease, so had to go for lots of check-ups the whole time we were together. He was open about how his kidney function was going down, but we never really got into the specifics of what that actually meant. 

He made it clear to me early in our relationship that if things kept getting worse, then he’d have to start dialysis to stay alive. I remember us having a conversation about how, if it came to it and he needed a kidney donation, then of course I’d get tested to see if I could donate. After that, it was never really spoken about as he never got to the stage of needing a transplant while we were together. 

We parted ways around 13 years ago, but always stayed in touch with each other as we have two boys together. Since then, I knew that his kidneys continued deteriorating. Around five years ago, it got to the point where he was told that he’d need to start dialysis as his kidneys were no longer working enough to keep him healthy. That came as a real shock. Our kids were too young to understand what it really meant, but still had to watch him get hooked up to a dialysis machine several times a week. All they knew was that their dad couldn’t do things other dads could, like go on holidays abroad or go swimming with them, and they didn’t like it. It was heartbreaking to see them, and him, losing out because of this thing we couldn’t control.  

During Covid, he had to completely isolate. The kids weren’t able to spend time with him for over a year. He’d come to the house, but wouldn’t be able to get out of his car. The kids couldn’t give him a hug. It was a really difficult time.  

One moment that really sticks with me was when I was at home. My youngest was ten at the time and was sitting on my bed playing on his phone. I looked over his shoulder and saw that he was Googling whether he was old enough to donate a kidney to his dad. That made me so emotional. I realised, I’ve got a chance to do this for my kids’ dad. Sean and I had been apart for years, but he’s still the father to my children. They were suffering, and there was something I could do to help. I’m a fit and healthy person, and I have an opportunity that other people would love to have. I had to look into it at the very least. 

We went into the hospital together to speak with their donation specialist. He explained that my kidneys weren’t a perfect match for Sean because they were a slightly different size. However, there were still options available. That’s when they told us about the Kidney Sharing Scheme – I could donate my kidney to someone else who was on the kidney waiting list and a better match for my kidney, then Sean would get a better matching kidney for himself in return.  

I hadn’t heard anything about the scheme before, but he was really good at explaining everything involved. We both agreed it was a great option, and we were obviously going to do it. I wasn’t locked to the idea of him having to have my kidney. If he could get an even better one by me donating, and there was the added benefit of someone else out there getting a better-matched kidney too, then why wouldn’t we go for it?  

Donating a kidney while filming a TV show 

It took a while to hear anything back after we signed the papers to go ahead, probably as we were still coming out of covid. But once everything was up and running again, things went quite quickly.  

Around this time, I began filming with Married at First Sight. Whilst I was on the show I explained to the producers that I might get a phone call while we were filming, and if I did then there was a chance I would have to leave because my priority was absolutely my kidney donation. The producers and the whole team were really understanding and were absolutely fine about it.  

In the end, I got the call five or six weeks after filming ended. I was in the kitchen when I got the call from the hospital to say they’d found a match for my kidney and for Sean, and they were ready to move ahead. I’d been looking forward to this call, and I always knew that if I felt unsure or uneasy during this phone call, then I was doing the wrong thing. But in the moment, I felt over the moon!  

After that, it was only a few weeks before they were able to arrange the operations. 

Operation day 

I was actually really nervous on the day of the operation. I remember being in the back of the car on the way to hospital and feeling really worried. That’s probably quite normal. But once I actually got into the hospital and spoke to the nurses, I became a lot more relaxed. I kept thinking about my kids and the difference I was making for them. After that, the day just went really smoothly. 

Sean’s operation happened in the evening after my own. I was able to see him face-to-face the following day after we’d both had a night’s sleep in the hospital. I was wheeled over to his ward in a wheelchair, as I was still feeling a bit groggy. When we got there, he was sat up in his bed having some food. Honestly, he looked the best he’d been in years! His face had colour to it, it wasn’t grey any more.