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“I fit dialysis around my life, and won’t let kidney disease define me”

07 May 2024

Despite three failed kidney transplants, and the prospect of needing dialysis treatment for the rest of her life, Lynzie Stephenson is defiantly living hers.  

She says: “Mentally I’m a positive person so I try not to dwell on things too much. You just adjust to it. I work full-time and I’m lucky that I can do my dialysis at home. I can still go out, socialise with friends and go on holiday. 

“On 16 June I’ll be at Kidney Research UK’s Newcastle Bridges Walk with my friend Paula, who has experience of kidney disease in her family. I’m really looking forward to joining in, supporting the charity and meeting people. I have so much personal experience of kidney disease, and I love to help others as much as I can because I know how daunting it can be when you’re first diagnosed.” 

Lady wearing bobble hat walking with her black dog, doing a selfie
Lynzie on a walk with her dog

Receiving my diagnosis

Lynzie, 40, from County Durham, discovered she had a genetic kidney disease – nephronophthisis type one, homozygous mutation in NPhP1 - when she was just 12 years old. She says: “I was displaying a lot of symptoms, being sick, feeling tired and I was always very pale. This went on for at least a year while I was being tested by doctors. Then I was referred to the Royal Victoria Infirmary for a biopsy. That’s when I found out. 

“Nobody in our family had kidney disease, but my mum and dad both had recessive genes which my brother, Christopher, and I inherited. I received my first transplant from a deceased donor at 13 years old, and my mum donated a kidney to Christopher which has lasted over twenty years. Sadly, my new kidney failed after nine. 

“It was quite hard for me at school as I was taking immunosuppressants following my transplant. The steroids changed my appearance, and I missed quite a lot of school because of hospital appointments.” 

Three failed transplants

When Lynzie’s transplanted kidney failed, she was 22 years old and had just started her first job. She says: “At that point I had to go onto dialysis. That was very hard because I just wanted to be like everyone else, going out with friends rather than sitting around the house dialysing.  

“I did feel fortunate that I wasn’t a child though, because I could learn how to do peritoneal dialysis myself to keep some independence. 

“When I received my second transplant from a deceased donor in 2008, that only lasted about two years which was disappointing. I just thought it would last as long as the first. After that, I took the decision to go on to haemodialysis. That was quite daunting, but when I started it wasn’t as bad as I thought. 

“My third transplant came in 2013, from a live donor who was a stranger to me, but it didn’t work at all. You have to accept that transplants aren’t always successful, and there’s always that fear that your body will reject the kidney.  

“It’s not the end of the world though. There’s always a solution, and for me the next option was haemodialysis, which I’ve been on ever since.” 

Fitting dialysis around my life

Dialysis is often incredibly challenging and restrictive for patients, but Lynzie has worked hard to minimise its impact and live a full life.  

She says: “Having kidney disease from such a young age means I don’t know any different. I’ve adjusted to it and it’s part of my life. It must be so hard for someone who has grown up being healthy to then receive a sudden diagnosis. 

“I’ve found home haemodialysis best fits my lifestyle and would recommend it to any kidney patients because it provides more flexibility. For me, with work and life, I fit my dialysis around that rather than dialysis dictating what I do. 

“I am a hybrid worker, so I work three days in the office and two days at home. It’s great because when I work from home I can just log off and dialyse straight away. I tend to plan my office days when I’m not on dialysis and that flexibility helps a lot. 

“I couldn’t dialyse at home without my husband though. He helps with the needles, administers my dialysis, and looks after me. He's amazing and has cared for me throughout everything. Having a loving, supportive network around me has been really important. 

“We’ve even been able to go to stay with my husband’s family in Australia. It did take some organisation to arrange the local hospital clinics and plan my dialysis around the 24-hour plane journey, but it was well worth it.” 

Female walking in a park, waring purple Kidney Research UK tshirt
Lynzie wearing her purple t-shirt

Supporting future patients

Lynzie is determined to share her experiences and support research to improve the prospects of those living with kidney disease. 

She says: “The work that Kidney Research UK do is so important. I’m interested in how patients with genetic diseases can be helped, particularly children. If we can help them earlier on that would be brilliant. The more research the better.” 

Coincidentally, Lynzie was originally diagnosed by Professor John Sayer, a professor of renal medicine at Newcastle University, who we are currently supporting with research into genetic causes of kidney failure. You can read more about his research. 

Lynzie has also offered her time for Kidney Research UK at events such as the Great North Run and says: “I really enjoyed volunteering. It was nice meeting runners and the other volunteers to find out their stories. I’m excited to meet more people at the Newcastle Bridges Walk, and support research into kidney disease.” 

Walkers at London Bridges Walk 2022

Newcastle Bridges Walk

You can join Lynzie and hundreds of other supporters at the Newcastle Bridges Walk on 16 June to raise awareness and money to support making vital research happen.

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