Stacey’s Story

Back in September 2018, my husband Andy’s health was deteriorating. His head was buried in the sand a bit regarding his kidney disease, but after a difficult summer he finally saw his specialist. They told him his function had dropped massively, and he was classed as being in kidney failure.  He was too overweight for a transplant at that point and the feeling from the specialist was that he would be on dialysis by Christmas. 

Being a science teacher, I knew a kidney transplant was a consideration if Andy was able to sort his weight out. He started running, and I followed suit soon after. In April 2019 he was healthy enough to be deemed okay for the transplant!  

In October that year we had a meeting with the transplant consultant at the Royal Liverpool Hospital. He told us although I was a good match, the idea of a better match would be possible through the ‘sharing scheme’, where my kidney would go to someone else waiting for a kidney who was a better match to me, and then Andy would also get a better-matching kidney from someone else looking to donate. We decided to go for it. 

We continued to run and stay healthy and positive while we waited for the operation. Our first operation date was scheduled for April 2020, though this was postponed due to the pandemic.

Unfortunately over the next few years we had several tough close calls where we would be given a date for our transplant, only for it to be cancelled for one reason or another. One time we had got to the point where we were both in hospital and I had an arrow drawn on me pointing to my kidney, before it was cancelled at the last minute due to a cough. They made it clear the whole time that the transplant would only take place if they were certain it would be a success and we were both healthy enough for the operations. It took a long time before I could accept that it was not my fault and there was nothing I could have done to change what had happened. It just wasn’t our time. 

Andy’s health deteriorating further, to the point where his kidneys were only functions at 5-6% of their capacity. He began peritoneal dialysis in October 2021. I couldn’t go to the training on how to do his dialysis, as I had covid and had to isolate for 10 days, so I used the time to read the manuals and watch lots of videos, to support Andy with this next step on our journey. 

Moving into 2022, dialysis continued for Andy in a positive way. I became good at setting up the machine for him and started sleeping through the noise at night. We were still being put into the sharing scheme each quarter that year, but we heard nothing. That is, until August 2022.  

I vividly remember the day. I was at the commonwealth games in Birmingham for the first day of athletics. Ann, our transplant coordinator, called and told us the news that we had been matched, and they wanted the operation to happen by September before they moved into a new hospital building.  

The emotions rolled back in. It was a real rollercoaster, up and down again just as before.  I was excited again for Andy, but scared of the real prospect of my cough returning and the operation being cancelled again. Where should we put our girls?  What would work say?  

This time the operation wasn’t cancelled (though it was delayed until November in the new hospital). No cough. No isolation time required. Everything went to plan! 

My hospital bed wouldn’t fit into the anaesthetic room, so straight into theatre I went. I had my wooden cross in my hand and kept my eyes closed the whole time as I didn’t want to remember the cold, silver sterile room. The mask went on, and I don’t remember a thing until I woke up hours later, cross still in my hand.  

My operation went well, my kidney had been successfully transplanted into my recipient. Andy’s operation went well with only a few hiccups. His new kidney was working well (and still is)! 

I didn’t realise before, but this was the start of hardest part. The recovery period. My own recovery was textbook. Out of bed on the Friday, walking on the Saturday, then dispatched from hospital and home on the Sunday. From there, it was even easier to recovery at home. My wounds healed well, and the World Cup was on for November and December, so there were loads of football on TV! 

Andy came home on the Wednesday after me. Our family and friends were a massive help. Meals were cooked, and our girls were taxied about so their life could be as normal as possible. By January I was back in work as a teacher. Work were really good and understanding. I was allowed a phased return, and was back to full time by April. 

The only issues I have had since is tiredness and feeling the cold a lot more than before. Thermals were my favourite birthday gift in 2023! The fatigue is still an issue now, two years on. Bedtime is now about 9-9.30 and I am asleep so quickly! 

I hope that my story is helpful for someone else. The journey from making that choice back in 2019, to being tested, to having the operation and the recovery journey after has been a rollercoaster, both physically and mentally. But it is a journey I would choose again and again, even had I known what it would involve, and one I could only make due to the support and love of friends and family.  

Stacey 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.