Mum joins London Bridges charity walk after kidney failure causes son’s premature birth
A mother from Kent will walk 8.5 miles for Kidney Research UK at the charity’s London Bridges Walk this July, motivated by her own experience of kidney failure which caused her to give birth to her son at 26 weeks.
Natalie May, 44, needed an emergency c-section when her kidneys failed in 2016 and gave birth to a baby boy, who weighed just one pound and 13 ounces. Her son, Joshua, spent 12 weeks on a neonatal unit, while Natalie required 18 months of dialysis treatment before receiving a kidney transplant.
A personal reason to walk
On 6 July, Natalie will take part in Kidney Research UK’s London Bridges Walk with Joshua, who is now nine years old. Accompanied by close friends and family, they’ll join over 500 people who have already signed up to raise funds for the charity.
Natalie says: “I discovered I was living with kidney disease when I was 31, but my kidney function remained stable with medication. Terrifyingly, during my pregnancy, my kidneys were flooded with fluid, and it caused them to fail. I was told that my baby had to be delivered, or both our lives would be at risk.
“I couldn’t process it at the time. I just had to get on with it and be there for my son. When I think back now, it really upsets me. I’m so thankful that Joshua has grown to be healthy. He’s doing so well. Both Joshua and his adopted younger sister keep me busy!
“I was excited to sign up for the London Bridges Walk, supporting a cause that is close to me. It’ll be such an enjoyable day. There will be a buzz, and everyone will proudly wear their Kidney Research UK purple t-shirts as we walk together for the same cause.”
Diagnosis impacted my mental health
In 2012, Natalie was diagnosed with nephrotic syndrome, when protein was found in her urine during an annual medical assessment at work.
Natalie says: “It was completely out of the blue. I didn’t feel unwell and was living my best life. I worked as an accountant, enjoyed going to the gym and liked socialising at parties. Within two weeks of my medical assessment, I’d had a painful biopsy at Canterbury Hospital, and my whole world changed when it identified kidney disease.
“I cried because I didn’t understand what was happening. Everyone knows the importance of your heart and lungs, but I didn’t realise how vital your kidneys are. I was given medication, including high-dose steroids, to manage my condition, but every time my dosage was lowered it would worsen.
“The steroids were awful. I had insomnia and was manic. I’d be up at two in the morning cleaning. I gained three stone in less than three months and became depressed. I wouldn’t leave the house and experienced mood swings that impacted relationships.
“I was so tired and was repeatedly signed off from work. I kept trying to go back but eventually had to leave my role in 2014 – two years after my diagnosis. I’ve been very fortunate that my husband has been able to financially support us.”
Pregnancy and kidney failure
By the time Natalie turned 35 years old, doctors had found a balance of medication which worked for her, and she decided with her husband, Kevin to try for a baby.
Natalie says: “We knew it would be a high-risk pregnancy because of my kidneys and kept in close contact with our healthcare team. My kidney function was at a good level despite my nephrotic syndrome, but when my blood pressure became too high when I was 26 weeks pregnant, I was kept overnight for observation at Medway Hospital.
“The doctors discovered my kidneys had failed and I needed an emergency c-section. Joshua was tiny when he was born and was kept on a neonatal unit for 12 weeks. Meanwhile, I was taken to Canterbury Hospital for six weeks, so they could care for me and drain excess fluid from my body. It was hard being separated, but I visited Joshua every day.
“When I was discharged, I continued to be monitored and had to start dialysis treatment in hospital three times a week, for four hours each time. I experienced panic attacks and vomiting during sessions and nurses had to slow the treatment down to help me cope. It was painfully sad meeting people on the unit who subsequently died.
“Being on dialysis is lonely. I struggled to walk and had to give up hobbies like swimming. Life changed and I couldn’t socialise as much. I was always open with family and friends about what I was going through and that helped me emotionally.
“I just wanted to be at home, but even when I was, I’d still need to sleep because of the tiredness that comes with kidney failure. I felt like I wasn’t fulfilling my role as a new mum because I wasn’t around enough. I was always on dialysis or too poorly."
Sister’s kidney gift
After a bilateral nephrectomy – surgery to remove both kidneys – to limit the chances of a new kidney being affected by her nephrotic syndrome, Natalie was ready for a transplant.
Natalie says: “I was fortunate to have several family members who came forward to be tested as live kidney donors. My sister, Nicola, was a perfect match, and I couldn’t stop smiling. I was counting down the days on dialysis until my transplant.
“I was on dialysis for 18 months in total – and then it happened. I remember waking up after my transplant and being taken to see my sister and the rest of our family. It was an amazing feeling. It took my sister a few days to recover but she’s doing great now.
“Things haven’t gone as smoothly for me. I found out soon after my transplant that my nephrotic syndrome had returned, and that caused my immune system to attack the new kidney. That was demoralising and upset me a lot.”
Natalie needed plasmapheresis for two years post-transplant - to remove harmful antibodies that may have caused her body to reject a donor kidney. This procedure is similar to dialysis, filtering the blood but specifically removing antibodies from the plasma.
Natalie says: “It helped protect my new kidney but caused me to become anaemic. I remember feeling so low and being unable to keep my eyes open. I needed iron infusions to boost the levels of iron in my bloodstream.”
Another setback came when Natalie experienced severe stomach pains and was diagnosed with diverticulitis – a condition which affects the large intestine (bowel).
Natalie says: “I needed an emergency operation and ended up having a hole in my bowel. I now have a stoma bag to remove waste from my body. It was scary having another long stay in hospital after the first time. My kidney function was impacted but thankfully is continuing to do its job seven years on from my transplant.
“I only need a small dose of steroids and anti-rejection medication to look after my kidney now. I still see my renal consultant every eight weeks, but the past year has gone well. I’ve reclaimed my life and am now able to do lots of what I enjoy again. I know I might need dialysis or another transplant in the future, but I try just to live day by day.
“The nurses who have looked after me are amazing. I’ve known some of them for a long time and they’ve become friends. Without them and my consultant, Dr Mike Delaney, I don’t know where I’d be. Their support and the way they treat me has been amazing.”
London Bridges Walk
Natalie is looking forward to taking part in Kidney Research UK’s London Bridges Walk on 6 July. The event begins at Vauxhall Park at 10am and offers a 2-mile or 8.5-mile route for anyone to join, walking across London’s iconic bridges.
Natalie says: “I am determined to raise money for research into kidney disease. The idea of funding a cure is incredible. Being able to find ways to reduce transplant waiting lists would also be a huge step forward.
“I’ve been walking lots in preparation and have been wearing my Kidney Research UK t-shirt to help raise awareness. People don’t realise how important their kidneys are. I never knew before my kidney disease changed my life. Training is also helping me improve my fitness, so that’s a bonus!”
If you've been inspired by Natalie's story, sign up to join us at the London Bridges Walk or donate to Natalie's fundraising page to support research to transform treatments for the future.
London Bridges Walk
Join Team Kidney and walk across the iconic bridges of London this summer to help fundraise for vital research to transform treatments.