An Edinburgh man with kidney failure received a transplant from his mother shortly before she passed away and says that it has 'transformed his life'.
Neil Scully, 43, started experiencing symptoms such as fatigue and loss of appetite at the start of 2018 but put it down to the arthritis he has lived with his whole adult life. Instead, Neil was developing chronic kidney failure that ultimately led to months of gruesome and tiring dialysis that changed the way he was able to live his life.
Working for life insurance company Aegon, Neil said his average day was consumed by his job during the day and dialysis at the Royal Infirmary in Edinburgh in the evening, sometimes not getting home until midnight. As well as suffering from fatigue, Neil had to control his diet to drink just 600 millilitres of water a day and struggled with everyday tasks.
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After months of tests Neil's mum was chosen as a near-perfect match to perform a kidney transplant, a difficult decision that Neil's mum insisted on, but one he found difficult to get his head around. A year after the surgery was successful and Neil's life was transformed, he lost his mum in a tragic unexpected incident.
Partaking in Edinburgh's Kiltwalk 2022 with his aunt Regina, who is also raising awareness on kidney issues and has struggled with her own health, Neil is set to walk four miles around the city to support Regina who was also his mum's best friend.
Speaking to Edinburgh Live, Neil, from the Liberton area of the city, described his health rollercoaster and how it had an impact on his life, as well as covering the highs and the lows over the last four years.
He said: "I initially went to the doctors and was referred to the hospital by my GP in March 2018. They took initial tests and biopsies and I went back in April as my kidney function level had dropped from about 50 per cent to 15. I was told I needed dialysis very shortly, so it escalated very quickly and it took a wee while and operations as normal dialysis from home didn't work. I ended up having to get chemo dialysis at the hospital which I had for over a year.
"I was working full time and going there three nights a week, getting there at half six and coming home close to midnight which was really tiring. It turned out the case was quite a rare condition and I was given medication which meant the potential transplant wasn't possible while that kicked in. During this time though they ran tests on my family and it turned out my mum was pretty much a perfect match for a transplant.
"The transplant gave me my life back and made a huge difference. It was very tough and I didn't get much sleep while undergoing dialysis. All I was doing is working, going to the hospital and staying in the house. Before I was originally diagnosed I was generally tiered and sick but I didn't know why, I'd put it down to my arthritis and I probably could have gone to the doctors earlier as it went on for over a year before I got help.
"I had to follow a vert strict diet. I was only allowed to drink a litre a day but as your food contains liquid I was down to about 600 millilitres a day which obviously isn't a lot to keep you going. It was quite a tough process to go through and I take my hat off to those who have to go through it for years, it would have been hard for me to continue working full time if I had to continue much longer. My wife and friends helped me through it and obviously my mum and dad too."
Neil said that the goal was always to find a suitable donor for a transplant and even though his mum instantly volunteered, he said that he could never have imagine accepting it when he first took unwell. Neil added that it took nine months to provide the medication was working and a further six to prove his mum was a suitable donor.
Although dialysis could have continued, doctors were keen to find Neil a donor straight away. He added: "When I first heard about kidney failure, I didn't want anyone in my family to have to give me a kidney as I didn't want to put them at risk, but the more you find out about it then you learn there is very little risk to the donor.
"If I'm honest, my mum wouldn't have let anyone else do it because she was determined to be the one and thankfully she was the best match. It was tough to think about that and before she went for the operation, it took longer than the doctors had told me so I was worried and constantly wondering what was going on, but it was the best gift I've ever had."
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Around a year later, Neil's mum tragically passed away after collapsing at home due to a blood clot, which came as a total shock to him and the rest of his family, although Neil admitted it feels like a part of her is still living within him due to the transplant.
He continued: "There is a definitely something there in my mind and I'm always determined to keep it going as long as I can as she went through the operation for me.
"I feel brilliant. I still need to watch my diet but they're all small sacrifices as it's night and day compared to how I was. I didn't realise just how sick I was until I had the transplant, I remember thinking 'this is what being well feels like' afterwards.
"Over the years I've done some work and challenges to raise money for kidney research, the four-mile Wee Wander we're doing isn't too difficult for me now but I'd never have been able to do it four years ago. My wife is now joining me and my aunt Regina who was one of my mum's best mates and who is also raising awareness for the same cause.
"She's had two strokes and a knee replacement in the last few years so I'm going to support her as she wanted to give something back and I'm all behind her on that."
To donate to Neil's aunt's fundraiser, spreading awareness for kidney failure, you can do do by following this link.
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