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‘I’d given up all hope and knew I was going to die – then a phone call changed my life’

Mum Sarah Jane Robinson owes her life to a precious gift from a teenage girl, who had signed up to be an organ donor. After giving up all hope, the 48-year-old received her kidneys and pancreas in a transplant operation in 2017.

Not a day goes by when she does not think about that 19-year-old girl. But as World Kidney Day approaches, she feels the debt of gratitude even more.

When her kidneys failed shortly after her 40th birthday, Sarah was kept alive with four sessions of dialysis a day and daily insulin injections.

“A girl saved my life by agreeing to organ donation,” Sarah says. “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’ll always be incredibly grateful but sometimes I feel guilty.

“I have a responsibility to make sure these precious organs last as long as possible.”

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Sarah, a former medical secretary, was first diagnosed with Type 1 diabetes at age 20.

“In the space of two weeks, I lost a lot of weight, I was thirsty and I felt my eyesight going,” she says.

Despite there being no history of the condition in the family, shortly afterwards, her daughter Kayleigh, now 28, was also diagnosed with Type 1 diabetes, aged just two.

Her second child Aimee, now 25, was diagnosed at just 10 months.

“We were on insulin injections and regular glucose monitoring two to four times a day. I was a single parent and life was challenging,” Sarah, from Liverpool, says.

“It was heartbreaking, sticking needles into my little girls. But I tried to make things as normal as possible.”

Shortly after her 40th birthday, Sarah’s health started to deteriorate.

“I’d celebrated in Benidorm and I thought I’d partied too hard. I was so tired and my periods stopped. Then I convinced myself it was the ­menopause. I was working at the Royal Liverpool Hospital and falling asleep at my desk.

“Eventually, at the beginning of 2013, I was diagnosed with a kidney infection and had blood tests.

“I knew it was bad when the receptionist called me straight away the next day. I thought I had cancer, but my kidneys had failed.

“The consultant told me without dialysis and a transplant, I wouldn’t survive beyond the age of 45. Diabetes had destroyed my kidneys.”

Three million people have chronic kidney disease, with 63,000 in kidney failure at any one time. Because of this, there are 5,000 people on the waiting list for a kidney transplant, with 3,000 operations taking place each year.

Initially, medication kept Sarah’s kidney function at 18 per cent. But after two years it sank to 15 per cent and she was put on the transplant list for a double kidney and pancreas transplant as well as starting dialysis.

“It was horrendous,” Sarah says.

“I had to do it four times a day, seven days a week. It took me an hour each time. My girls took on total financial responsibility for the household. I was so weak I couldn’t walk upstairs.

“I didn’t live. I merely existed. I felt ill all the time and suffered with anxiety.
I fell into a deep depression.”

Sarah found waiting the most agonising part of being on the transplant list and wouldn’t let her phone out of her sight. Eventually the call came at the start of 2017 – but Sarah had a chest infection. Four months later, at 1.30am, she was asked into hospital at 6am. But she had a bad feeling.

“I was terrified,” she says. “I knew something was going to go wrong. When I woke from the operation, my dialysis tube was still in. I’d had a heart attack on the operating table and the transplant had to be halted.”

Sarah was devastated to be taken off the list while doctors investigated. Even though she was put back on weeks later, she felt low.

“I’d lost hope,” she says. “I wanted it to end as I felt so ill and I didn’t want my kids to suffer. One weekend, I decided I’d call my nurse to ask for dialysis to be withdrawn.”

But fate intervened. That Monday, at 3am, organs became available.

“I felt like someone was watching over me. I knew I was going to be OK.”

Surgery went well but Sarah contracted pneumonia and spent 11 days in ICU. It was 50/50 whether she would make it, but after three weeks she was allowed home. Now Sarah feels “a thousand times better”.

“Dialysis made me feel exhausted. You look like death, your body is bloated with toxins and fluid.”

But it’s not all plain sailing. She takes daily medication, which has made her hair fall out and believes transplant patients should receive counselling.

“Everyone assumes you get back to normal life, but that isn’t how it works,” says Sarah. “We ignore the mental impact of transplant recovery and kidney disease in general.”

The past year has been hard for Sarah and her daughters, who work for the NHS, as they are shielding. Kayleigh also has long Covid and Sarah worries for their future so she’s raising awareness for the Andy Cole Fund, a charity set up by the former Man United star.

“Supporting it means so much to me as it helps pay for research for those suffering with kidney disease, or like my girls, whose Type 1 diabetes may cause them kidney problems further down the line.”

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