On the day her father died, Joanne Adam got a call from a doctor. A tumour had been found on her liver.
This was a devastating blow. It was made worse by the fact her tumour was so rare it took years of tests, and pain, before it was even identified.
Then the news was mixed.
Joanne’s tumour was treatable, doctors said. But it would required major surgery, and an organ donor.
It transpired Joanne didn’t just need a new liver to survive. The 47 year-old required a new bowel, pancreas, and stomach, including her small and large intestine.
“I’m a fighter,” Joanne told me. “I heard what they were telling me and it was daunting, but I wouldn’t give up.”
Waiting for one new organ is made all the more difficult by the fact the UK has one of the lowest donor-consent rates in Europe. But Joanne was waiting for six new organs in total.
“Doctors told me to pack a bag and wait for a call," she said. "If the organs I needed were found, I had to be ready to rush to hospital at a moment’s notice.”
What’s more, Joanne would need to travel more than 350 miles from her home in Johnstone to Addenbrooke Hospital in Cambridge for such a complex operation.
This painstaking wait under a cloud of uncertainty went on for more than six months, but finally the call came.
Joanne was under the knife for a marathon 18-hour operation, and it was also discovered during the procedure that she’d need her spleen removed. This major operation, though, was a success. Joanne is recovering ahead of schedule, and has been allowed home in time for Christmas.
“I can’t thank my donor enough,” Joanne says. “They have given me the best gift possible.”
Joanne doesn’t know whose organs she received. She just wants their family to know what it means that one life ending has given her a new lease of life with her family.
“Now I am home to spend Christmas with my kids and grandkids," she says. "I’ll see them opening their presents on Christmas morning. But my organs are the best gift I will ever receive.
“I want to say ‘thank you’ to whoever it is that saved my life. I promise these organs will be looked after!”
The UK simply has too few people signed up to be organ donors, though. Almost 7,000 are waiting right now for an organ donation, and three people die waiting for an organ every day.
That’s why the government is today launching a consultation period for an opt-out donor system in England.
The opt-out system already exists in Wales, where patients are presumed to be willing donors unless they’ve registered otherwise. Scotland is due to introduce a soft opt-out system before 2021, where consent will be presumed unless patients or their families object.
Northern Ireland has previously failed to get a similar bill through at Stormont, and there are voices of dissent in England who say there is not enough evidence the ‘opt-out’ system is the right path. Others have concerns about vulnerable people being made organ donors if they lack the capacity to remove themselves from the register.
But Joanne thinks an op-out system would be a positive step.
She said: “The waiting is so hard. You’re climbing up the walls waiting for an organ to be found, and you can become depressed thinking it is never going to happen. I was so lucky.”
Joanne is home in time to decorate the Christmas tree with her family and is slowly but surely recovering her strength. She appreciates her organs all the more because she knows her gift is one that too many are still waiting to receive.