Sunday Mirror (Northern Ireland)
Liver in a box saved my life
PIONEERING DEVICE FLOWN 3,500 MILES FOR OP
HELEN Rawlinson lay in her hospital bed, hours from death, writing goodbye letters to her family.
At her side, fiancé Darryl Flynn was holding her hand, not wanting to give up hope.
At just 29 and waiting for a second liver transplant, brave Helen seemed to have run out of chances to live.
Because of her medical history and fears her body would reject a new liver, she was way down the priority list for the healthiest transplant organs available – normally from donors who have been on life support.
And she was so poorly, she was given little chance of even a “lower quality” donation after circulatory death (DCD) liver – likely to be damaged by lack of blood circulation after death through heart or lungs failure.
But, almost miraculously, Helen was about to be given the best gift of her life. A liver wrapped up in a BOX.
As she lay dying, her consultant liver specialist at St James’s University Hospital in Leeds decided on one last throw of the dice.
Magdy Attia had been involved in clinical trials with American company TransMedics which had built a pioneering Organ Care System machine that mimicked conditions in the human body, keeping a donor liver healthy and “alive” with blood circulating through it.
Mr Attia told the firm of Helen’s plight and astonishingly they agreed to send the box – still undergoing trials in Massachusetts – on a 3,500 mile journey to Britain if a donor could be found.
Crucially it also meant any DCD liver inside could be thoroughly tested by doctors before the operation to ensure it was viable.
BATTLING
While all this was being quietly arranged, teacher Helen, of Lancaster, was preparing for death after years of battling autoimmune hepatitis – a condition where the immune system attacks the liver.
After falling ill in 2008 she had been placed on the emergency transplant list and a match was found within a week. “It took me a year to recover properly from the operation,” she says: “My body felt like it was broken.”
Helen lived normally until 2016 when her liver came under attack again. She was also diagnosed with a heart defect which needed an op to insert a stent.
She became so weak, she was placed on the organ transplant list again in March 2017. But her risk of a second failure put her 47th in the queue for a high-quality donation after brainstem death (DBD) liver.
“I was so, so poorly. I spent the next four months dying in hospital,” says Helen. “I turned extremely yellow and was really skinny. I looked awful.
“I was on the list but until it was my turn there was nothing they could do for me. I was just waiting and waiting and I felt myself just wasting away. My family tried and tried to get me up the list but there was no movement.”
The hospital even offered Helen and Darryl, 28, the chance to marry in its chapel, but the couple refused as Helen felt it would mean she was giving up on her chance of life. She says: “I always held on to the hope that I would get better.” But by August Helen had deteriorated so much she was put on palliative care – and had asked to go home to die. She says: “I had given up all hope. I had fought for so long and had tried to stay positive. I asked Darryl to take me home to die. He was distraught. It was absolutely horrendous for us.
“I was on my deathbed. I wrote letters to my family for when I was gone.”
But just one day after she had asked to be taken home, a matching donor with a “lower quality” liver was found in the north of England. In a race against
time, the Transmedics box was put on a flight to the UK and the bedside of her donor. And its incredible preservation techniques meant it ticked all the boxes for Helen. The magic box was then rushed to Leeds and Helen was prepared for an operation that would save her life – and make her the first person in the UK who has undergone a second transplant with the help of the machine.
Helen says: “We were all absolutely over the moon. They said I only had until the end of the week. I didn’t think I’d get a new liver – I had to come to terms with dying. The machine saved
Without that machine I wouldn’t be here. They completely saved me
HELEN ON TRANSPLANT TEAM THAT SAVED HER
my life and can save so many others. All I was told is that the donor was in the north of England.
“The liver was put into the machine and sent to me in Leeds. It preserved the organ, kept it healthy for me and made it possible. Without it, I wouldn’t be here now. What the company did, to send me the machine, was absolutely amazing. They completely saved me and have changed my life.”
Within days Helen’s jaundice disappeared – and 10 days after the op she was allowed home. Mr Attia told us the machine is the “Rolls-Royce” of organ transplantation. He said: “DCD livers are lower in quality and present a higher risk for transplants. The machine tests the organ function.
“It’s also one way of avoiding damaging the liver.
“It’s kept warm and supplied with oxygen. With Helen, a DBD liver was not available to us. She was very sick and was disadvantaged by the allocation system. The only way to treat her was with a DCD liver using the machine. She needed a transplant urgently and we approached TransMedics on compassionate grounds.
They agreed to send it to us for free with no hesitation.
“They responded within 24 hours and the machine was available to us within a week.”
Similar machines that are part of a European trial are being used in a handful of hospitals in the UK, but there were none available for Helen at Leeds.
The OCS perfusion machine isn’t readily available for patients as it is still undergoing US trials, which
are due to be completed in December 2020. Helen is now looking to the future, and will marry welding inspector Darryl in May 2020 at their local church. She says her wedding will be “full of music, love and laughter”.
Over the last eight months Helen has amazed doctors with her seamless recovery, and says she feels healthier now than she has in years.
“I couldn’t thank the company or my doctors enough. I can’t put it into words how lucky I feel,” she says. “I’ve got a life now. There’s no greater gift.”
HELEN Rawlinson was just hours from death.
Aged just 29, her liver had failed, and she had written goodbye letters to her family.
But then her NHS consultant at St James’s University Hospital decided on one last gamble. A liver in a box. A box at the cutting edge of technology. A box that saved her life.
Our NHS has done it again. From the depths of despair, Helen is now planning her wedding.
She says: “I have a life now. There’s no greater gift.” We agree – and there’s no greater institution than our wonderful, dedicated NHS.