09 January 2024 , 08:02
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A mum whose liver deteriorated to what doctors called a "tumour machine" has become one of the few people in the world to receive the organ from a donor who was also a transplant recipient.
Mandy Ambert, 67, had life-saving surgery when two tumours were detected on her liver following her diagnosis of autoimmune condition primary biliary cholangitis (PBC). The operation would be the first of its type the hospital would carry out - and only the 11th anywhere in the world.
Following discussions with staff at Birmingham's Queen Elizabeth Hospital, Mandy chose to go ahead with what's known as the "domino" procedure, where someone has received a liver from a donor, who was also a liver transplant recipient. Surgery took place in April and despite its unique nature, all went well and Mandy has now returned to her beloved golf, squash and is back walking her dog regularly.
Mandy in hospital after her pioneering surgery (Supplied)
The mum, pictured with husband of 25 years Louis-Jean, became one of the first people in the world to receive a liver from a donor who was also a transplant recipient (Supplied)The former physiotherapist, who lives in Newcastle-under-Lyme, Staffordshire, told Mirror: "The whole thing has been incredibly levelling and humbling. When my first anniversary comes around, I'll be celebrating that I've done well and I've got a future ahead of me, hopefully. I'm going to be very acutely aware that there are two sets of families, who will be sat down crying their eyes out, because it's the anniversary of their son or daughter's death, or whoever it is."
Mandy, who is now editor of golfing publication Midlands Golfer Magazine, was made aware the transplant was a life-threatening procedure. She was at risk of a major bleed or a clot developing in her blood vessels. As she is now healthy, she is unaware of the prognosis of the ten others who have had the "domino" procedure, and so the Mirror has chosen not to publish details.
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Many explained: "I don't know how the other 10 (people who have had the 'domino' operation in the world) have done. That's let's hope they're all doing swimmingly. At the time, I daren't ask how the others got on just in case they've not done so well. I don't want to know that really. My family and I just collectively decided to go ahead."
The mother, from Staffordshire, is back out enjoying the company of her family, including her grandchildren and dog (Supplied)Mandy, who has two grandchildren, was told her liver had become a "tumour machine" in July last year after two cancerous masses were found in quick succession. This was caused by her PBC, diagnosed in 2007 despite having no symptoms of the condition.
"There were two tumours and they couldn't remove them. I said, 'Well, can't you just remove them?' They said 'No, because your liver is now a tumour making machine' Those were the words they used," Mandy continued.
"The caveat to the operation was that this donor had has had a liver transplant. So it meant that that liver had gone from one person into another and into me. The surgeon had operated on the original case and was reassuring. They obviously had a massive, multidisciplinary team meeting on it. They said 'we can anticipate that you may be more predisposed to rejection, because of the number of hosts this liver has been through'."
The former physio enjoys squash and months after the operation was back at the court (Supplied)
Gran-to-two Mandy spoke to raise awareness of organ donation (Supplied)But Mandy's surgery in April went well and now she has praised the team at the Queen Elizabeth Hospital, which is in the Selly Oak area of the city. She's returned to her active life, a lot of which is spent on the golf course or writing about the sport.
Now the mum wants to raise awareness of organ donation because the availability of some organs remains scarce. Families who lose loved ones can choose for their organs not to be donated, even after their death. This can happen even if that person was on the organ donation register during their life.
Mandy added: "I've always been on the donor register. One donor, one person, can can save more than nine lives. That's the crazy thing. Some organs can be split up, different parts used.
"Could you imagine, though, if I'm relying in intensive care braindead and my husband's been told I'm that I'm dead, and then there are asking questions like 'can we have Mandy's organs?' We can take away the anxiety of having to deal with all that if we make the wishes clearer, like having essentially something like a drivers licence? That is still a national sticking point."
Mandy talked to her family before deciding to undertake the 'domino' procedure, becoming the 11th person in the world to do so (Supplied)
The keen golfer says she feels 'extremely lucky' to enjoy her life again (Supplied)Mandy was managing her PBC with medication until the deterioration of her liver, spotted in a CT scan Mandy had at a routine annual cancer surveillance check-up. Before the donor was found, the former critical care physio had chemotherapy.
She said: "I learnt that this was a unique situation to be in. I had many questions regarding potential issues, but felt confident in the team looking after me... It was great news there was a suitable match, but it was obviously very sad and humbling that someone had passed away. Their family were generous in adversity to volunteer their organs. I am forever in their debt. I feel extremely lucky that this donor came up when it did."
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Mandy is now supporting University Hospital Birmingham Charity's appeal to fund "liver in a box" technology and has offered support to patients waiting for a transplant. The charity's Head of Fundraising, Charlotte Schofield, said: "Mandy's story is incredible and shows how amazing the doctors and clinicians are at Queen Elizabeth Hospital to be able to carry out this procedure. UHB Charity support patients and their families through the transplant process."
To donate to the charity, visit this link.