Cash Murphy
BBC News, South East
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The waiting list is at an all-time high
A mum from Surrey who was not on the organ donor register until her two young daughters needed heart transplants has said she realised “how important it is” after her children spent time on the waiting list.
According to new figures by NHS Blood and Transplant, 8,096 patients were on the transplant waiting list as of 31 March – the highest number on record.
This record number includes 95 people in Surrey and does not include the 3,883 patients suspended due to being unfit for transplant or temporarily unavailable.
Jo Perry, from Leatherhead, said she owed both her daughters’ lives to organ donors and called for more people to be on the register.
Her daughters Lucie and Isobel, now 16 and 10 respectively, have each had a heart transplant after being diagnosed with dilated cardiomyopathy, a condition where the left ventricle becomes enlarged and weakened.
Mrs Perry told Radio Surrey that Lucie was diagnosed “out of the blue” at the age of two, before Isobel was confirmed to have the same condition during a check up seven years later.
Referencing Lucie’s diagnosis, she said: “I went from being with the GP in the morning to that in the evening… it’s a lot to get your head around.”
Going through the process again with Isobel was “horrific”, Mrs Perry admitted.
Lucie got a new heart within eight days of being listed, while Isobel – who had complications prior to joining the list – waited just 10 days.
Mrs Perry said the disease meant both children had enlarged hearts.
“It meant that there was more space for a larger heart… so they could have an older child’s heart,” she said.
While in hospital with Isobel, she said the stark reality became apparent.
“There were four children waiting for hearts, and two of them didn’t make it,” she said.
Admitting that she wasn’t previously on the donor register, Mrs Perry said that these experiences shifted her perspective.
“I believe you can’t be willing to take something without being willing to give back,” she said.
“My daughters would have both died if they hadn’t got that heart… we got very lucky, twice.”
Opt-in system
Dave Webb from Walton-on-Thames now lives a full life, but it was an entirely different story just six years ago as the 52-year-old awaited a new heart.
Mr Webb was born with hypertrophic cardiomyopathy, a condition in which muscle tissues of the heart become thickened without an obvious cause.
“In my adult years – in my 20s onwards – I begun to realise that I did have some symptoms and I couldn’t function as well as, say, other people,” he told BBC Radio Surrey.
The 52-year-old’s deteriorating condition meant that he reached a crossroad by his mid-40s.
“If I didn’t receive a transplant, I wouldn’t last for many more years,” he said.
Mr Webb was “very, very fortunate” to only be on the waiting list for four weeks, and after receiving a new heart at the age of 46, said he felt completely rejuvenated.
Alongside getting back into sport, he spends time meeting other transplant patients and has really relished “celebrating the gift of life that we’ve been given”.
Referencing the opt-in system that has been in place since 2020, Mr Webb says the most important thing is that people “make their wishes known” to family.
“They hold the ultimate key, because when something does happen, they have to be referenced and they have to agree,” he added.