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Julie’s Story

My son, Will, was playing golf the week before he found out he had kidney disease. He felt nothing out of the ordinary outside of feeling under the weather. We thought it was just a cold at first – this was March 2021, near the end of covid. He just looked very tired and full of a cold.  

He continued playing golf through the illness, and his dad noticed that he didn’t seem to see the ball very well. We persuaded him to go for an eye test just to check everything. What did he have to lose? The optician at Specsavers couldn’t see anything wrong with his eyes, but arranged for him to go into hospital the next day just to be checked over to make sure. In retrospect we couldn’t thank her enough – if not for her, Will wouldn’t be here today.  

Will went into the hospital the next day. He even phoned his auntie on the way in and said he only expected to be an hour, so would see them when he was out.  

The hospital optician couldn’t see any issue with his eyes. They took his blood pressure as a precaution and found out that it was critically high. This was the point when everything really started.  

 

The family were quickly called into the hospital and told that they believed Will had kidney disease or kidney cancer. He wouldn’t be able to go home until they had spoken to experts in Preston.  

We all tried to stay quite relaxed. I went home to get his charger as he would be staying overnight, and by the time I was back he was hooked up to loads of wires. Later that evening he called us to say that a helicopter was coming to pick him up and bring him to Preston hospital. By the time I had made it to the hospital, he had already gone.  

Will ended up being in hospital for three months. We weren’t allowed to see him much at all because of covid, but he was allowed to come home a few times and his wonderful consultant always kept us up to date. At one point after leaving hospital he and his dad got covid, which really knocked him for six. He even had to go back into hospital for a time.  

We’re a very close family, so it really hit us very hard. His dad had a heart attack from the stress of it. Will is one of four brothers, and it affected his siblings very badly. We used to all drive down to Preston and they let us in one by one. That was a huge help, as it gave everyone the chance to see that he wasn’t at death’s door.  

It was another few months before he was finally diagnosed with kidney disease. That was a big moment. We had a name for what was going on. We didn’t need to worry about the unknown – though the circumstances were still very difficult. At this point his kidney function was down to around 4%. On the day of his birthday, he was put on dialysis to keep him alive. 

Some people may think that dialysis is a cure for kidney disease, so why the need for a transplant? But it’s not a cure at all. It’s a huge strain on the heart, like running a marathon every time you use it. Your life revolves around connecting up to this machine, for some people every evening. 

As soon as Will was put on the transplant list, donor testing began. Both my husband and I started testing to see if we were a match. We were initially told that we could both be a donor, but after some more tests and a health scare from Bill we agreed that it had to be me.  

I didn’t realise it would take so long from starting the tests to the operation itself. Will needed a kidney ASAP, but these things take time to make sure everyone is as safe as can be. For example, I was told that I needed more tests on my liver because they wanted to double check my health and that donating wouldn’t have negative consequences for me.  

 

After all my testing was done, we found out that Will wasn’t fit enough to immediately have the transplant, as his haemoglobin levels were too low. We kept on waiting for the good news. Then, when we finally got the phone call that he was fit enough to have the operation, it was a moment I’ll never forget.  

The operation itself went off without a hitch. Will and I went down to theatre – I went in the morning, with him going in around lunchtime – and by the afternoon it was all done. At 4pm, Will rang his dad to say it felt as though a cloud had been lifted from his shoulders. He had very little pain, and felt incredible! We got told that night that my kidney started producing urine for him right away. He went from almost no kidney function to 30%. Within 2 weeks, he was back driving again. He had his independence back.  

Honestly I don’t remember too much about the time straight after the operation. I basically slept through the whole weekend! As soon as I was told that Will was well, I was able to rest.  

I definitely needed a bit of time to recover. I work in a school and luckily my recovery happened over the holidays. I couldn’t walk very well for around 6 weeks. There wasn’t any real pain after the first few days, but my body needed to get back to normal. There was a space where my kidney used to be, so all my organs needed to get comfortable!  

I honestly thought that donating a kidney would be a lot worse than it ended up being. I had four kids to be looking after! How was I going to do it?! But honestly, my recovery was so much easier than I worried it’d be.  

At any time, there are thousands of people waiting for a kidney. Thousands of lives at risk. And people like me are lucky enough to be born with two kidneys, but only need one. I already share my car with my husband, my food with my kids – why not share my kidney too? I don’t need it, but someone else does. Why not? 

I also know first hand that donating an organ doesn’t just save a person. It saves a family. If we’d lost him, I don’t know how we would have coped. We’ve got our family intact, but there are still so many families out there still waiting.  

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