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Kidney disease ends here.

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Every year I quietly reflect on the family who saved a stranger’s life

11 February 2021

Andy Cole Fund supporter Sarah Jane Robinson knows she is lucky to be alive. However, she cannot shake the guilt for the family who courageously offered her the gift of life after losing their loved one.

Sarah Jane after giving a talk as an organ donation ambassador
Sarah Jane after giving a talk as an organ donation ambassador

The 48-year-old mum of two from Liverpool suffered kidney failure as a result of Type 1 diabetes.

Her kidneys failed when, after 20 years of injecting insulin, her diabetes spiralled, leading to ‘hellish dialysis’ for two years, plus a series of devastating health complications. Finally, she received a double pancreas and kidney transplant.

Sarah said: “The amazing gift means I’ve been able to continue being a mum to my two girls but every year I quietly reflect on the family who lost their loved one.

“I’m so grateful to be alive, but at times it’s mixed with guilt. This is all jumbled up with anxiety about what’s round the corner health-wise.”

Sarah Jane Robinson on her first day of dialysis
Sarah Jane Robinson on her first day of dialysis

I wish kidney patients had specialist counselling

The future is especially concerning as both Sarah’s daughters Kayleigh, 28, and Aimee, 26, have Type 1 diabetes.

“I wish kidney patients could access specialised counselling to come to terms with it all,” Sarah reflected. “It’s emotional stuff. You have your transplant, but when the physical side is OK, you’re left to get on with it.

“Our renal teams are amazing, transplants are a miracle of modern medicine, our NHS is fantastic, but the mental health impact is huge. It’s something that’s not talked about enough.”

Sarah is so passionate about better mental health support for patients that when she heard former Manchester United striker Andy Cole talk so openly about his battles with kidney disease on BBC Radio 5 Live she sobbed.

“His story felt like my story. A huge wave of relief washed over me because through his courage in talking honestly, more people will understand the impact of kidney failure."

Heartbreaking injecting insulin into my young girls

Sarah was diagnosed with Type 1 diabetes when she was 20 and in the space of three years, her daughters, Kayleigh (then two years old) and Aimee (10 months) were also diagnosed.

As a single parent, the pressure of coping with three insulin-dependent diabetics, each needing daily injections, was hard work.

“I can’t tell you how heart breaking it was to inject my small children. Life was difficult but we adapted, and I really didn’t think about the complications diabetes can bring until 20 years later when I began feeling unwell.”

Problems began at the end of 2012, after Sarah had enjoyed a week in Benidorm with her friends to mark her 40th birthday.

“It was like I couldn’t shake off the sickness," she said.

"I put it down to my age! I then wondered if I was having an early menopause as my periods had stopped for six months, but I thought I was being dramatic and imagining things so pushed it to the back of my mind.”

Sarah Jane with her girls, all diagnosed with Type 1 diabetes
Sarah Jane with her girls, all diagnosed with Type 1 diabetes

She was working as a medical secretary at that time and could barely keep her eyes open at her desk and most days felt nauseous.

“One day after work I went to the walk-in centre. I had a severe kidney infection and the doctor made me promise to go to the GP the next day.”

However, Sarah felt so sick, she went straight home to bed where she remained for three days.

I wasn't fun any more

“When I finally contacted my GP for blood tests, the bombshell was dropped. My kidney had failed, and I was sent immediately to Royal Liverpool Hospital.”

After three weeks in hospital she came home but was very unwell.

“For four years I didn’t live. I merely existed. I felt ill all the time and suffered terribly with anxiety. I fell into a deep depression."

At the age of 20, Kayleigh became the main bread winner, Aimee was sitting A levels and working part time. They both worried terribly for their mum. "Such huge burdens on young shoulders."

“I lost friends. Nobody understood what I was going through. They couldn’t understand why I wasn’t fun anymore.”

Eventually, Sarah began peritoneal dialysis, four times a day, seven days a week. “It was horrendous,” she recalls.

Shortly after dialysis began, her tube stopped draining fluid properly. A second surgery corrected it, but within 24 hours she contracted peritonitis.

Sarah with her daughter Kayleigh who became breadwinner
Sarah with her daughter Kayleigh who became breadwinner
Sarah Jane with her daughter Aimee
Sarah Jane with her daughter Aimee

Catalogue of problems

After almost two years of dialysis, her first kidney and pancreas double transplant match had to be turned down due to a chest infection.

Four months later, her second match came through, but as she made her way to hospital, she had a bad feeling. “I felt wrong and scared.”

Sarah suffered a heart attack under anaesthetic and surgeons had to halt the transplant.

“I came round and was heartbroken when I felt my tummy and the dialysis tube was still in,” Sarah said. “Then I was upset thinking organs may have gone to waste. I pray there was a second person in line to receive that gift of life.”

Finally, in July 2017, two months after the heart attack in theatre, Sarah had her third time lucky double transplant.

“It had been a terrible weekend. On the Sunday I was really low. It felt like everything was going wrong, I lost hope.”

Sarah felt so depressed she planned to call her dialysis nurse the next day to withdraw treatment. However, within hours of making that decision, she was called in the middle of the night, saying there was a donor match.

Somebody was watching over me

Sarah said it felt like somebody was watching over her but all she could think about on the journey to hospital and whilst being prepared for surgery, was how another family was suffering.

“In that moment I felt guilt and profound sadness that another family were going through hell, not even at the start of their bereavement journey. Those thoughts mess with your head, even years later.”

Surgery went well but two days later Sarah contracted pneumonia and spent eleven days in ICU, requiring haemodialysis via a neckline. After three weeks in hospital, she was allowed home.

“Everyone assumes you are fixed and can get back to normal life, but that isn’t how it works,” she said. “Kidney disease and transplant is not a one size fits all.

“I take meds to stop my kidney and pancreas rejecting, but the tablets make me feel sick every day and don’t come without risk.  I’m losing my hair and I’ve lost so much confidence, which makes me feel so sad.

It's good to talk

“Society tends to focus only on the physical but we’re ignoring the mental impact of transplant recovery and kidney disease in general, which we really need to address.

“Nobody should feel shame or guilt in admitting that they’re struggling to come to terms with their journey of kidney disease and transplant. We desperately need open and honest discussions without fear of being judged.”

Sarah’s donor was a 19-year-old girl and every year, Sarah and her daughters send a card to the family to let them know they’re thinking of them on the anniversary of her passing away. They also lay flowers at their local organ donation garden in memory of her and the gifts she has given.

“My support of the Andy Cole Fund means so much to me. My hope is that the Fund finds research to help those suffering with kidney disease and for my girls, in case Type 1 diabetes causes them kidney problems further down the line. Also, to give those suffering, hope of a better quality of life.”

Sarah Jane in ICU and on the ward
Sarah Jane in ICU and on the ward
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