‘Our lives are on hold’ - Daughter describes agonising 14-month wait for mother’s liver transplant in open letter to potential donors
PUBLISHED: 07:00 08 December 2016 | UPDATED: 10:50 08 December 2016
It has been 14 months – yet still Sarah Rye waits for the phone call that can save her mother.
While Mrs Rye and her father Roger care for Joan Rye, 68, they have become ever more conscious that time is slowly running out.
Joan, who has a serious liver condition, is one of 62 people in Norfolk whose life depends on an organ becoming available.
She and her family have been left waiting for more than a year – and that agony is today laid bare in a heartfelt letter written by Mrs Rye to the public in which she appeals for people to join the NHS Organ Donor Register.
It comes as NHS Blood and Transplant launches its winter campaign to encourage new donors. with 6,500 patients across the UK desperately in need of a new organ.
For Mrs Rye, watching the gradual deterioration of her mother – the grandmother to her child Ellie-Jo – is “the hardest thing”.
Joan’s liver problem emerged in 2012 and the disease has gone on to cause encephalopathy, which affects the brain. Her only cure is a new liver, but no suitable match has been found yet.
However if one does become available Joan will need to be rushed from her Downham Market home to hospital in less than 90 minutes to ensure a successful operation.
It has left the family in limbo.
“It’s frustrating – totally frustrating,” Mrs Rye, also of Downham Market, said. “I’m always thinking ‘can I get to where I need to be while giving myself enough time to get my mother to hospital if the call comes?’”
The experience has emphasised to the family the importance of becoming a donor. Mrs Rye, 43, signed up to be a donor just six months before her mother was diagnosed.
“You never know when you will need an organ yourself,” she said.
“If you’re willing to receive then you should be willing to give.”
According to NHS Choices the average waiting time for a liver transplant is 145 days for adults and 72 days for children.
But ex-Morrisons worker Joan has been waiting three times as long as that.
“We were told that sometimes you get four livers available per week, but other times four months can pass without one,” Mrs Rye said.
“We didn’t think it would be too bad at first, but now the question has become ‘how long is a piece of string?’.
“Mum is getting to the point where she needs a new liver now.”
NHS Blood and Transplant say a third of people in the UK have joined the organ donor register, but more are needed.
Sally Johnson, the body’s director of organ donation and transplantation, said: “It’s a terrible shame that so many people who want to save lives through organ donation have not taken the next, simple step to register that decision.
“This Christmas, we are asking everyone who supports organ donation to take just a few minutes of their online time to show that support by joining the organ donor register.”
Organ transplants - the statistics
As you read this there are 62 people in Norfolk on the transplant waiting list.
There are 41 such patients in Suffolk and 37 in Cambridgeshire.
The reason there is a waiting list is because there are more people needing organs than there are available organs.
Of the 6,500 people waiting across the UK, 150 are children.
The figures, from NHS Blood and Transplant, also show 23 people in Norfolk have died waiting for a transplant.
But last year 54 people in Norfolk had a potentially life-changing transplant thanks to donors, and there are 341,499 registered donors in the county.
In Suffolk that figure stands at 272,563, while there are 360,259 donors in Cambridgeshire.
There is no age limit to joining the register and there is a particular need for more black and Asian organ donors.
It is quick and easy to join the NHS Organ Donor Register.
Click here or contact the 24 hour-a-day donor line on 0300 123 23 23.