A mum-of-three has told how her life has been transformed by a liver transplant as shocking new figures revealed that 40 Cumbrian patients have died in a decade while on the organ donor waiting list.

Katie Hunt, 34, today paid an emotional tribute to the family of her 20-year-old donor.

Just two months ago, a chronic liver condition had left her suffering extreme fatigue and a range of range of debilitating symptoms.

Now happy and healthy, she spoke out to encourage people to talk about donation or join the Organ Donor Register.

Researchers say hundreds of life-saving transplants are missed every year because so many grieving relatives don't know what their loved one wanted.

Recalling how her transplant came about, Katie said it was 11pm on Monday, July 3, and the mum-of-three woke with a start as she realised her mobile phone was ringing.

“It was my transplant co- ordinator,” began Katie as she spoke of the remarkable 48 hours when the kindness of a grieving family and the skill of an NHS medical team gave her a new life.

“He asked if I was okay. I asked him if this was my call.
Turning point: Katie Hunt just before her nine-hour operation

“He said it was and that I needed to get over to the Freeman Hospital straight away.”

For six years, Katie had battled against a progressive liver disease which cast a shadow over her life and her family – husband Glenn, 35, their daughters Molly, 10, Sophie, 12, and six-year-old Ben.

The mysterious condition – known as primary biliary cholangitis (PBC) – meant Katie’s own immune system was attacking her liver’s bile ducts. If untreated, it can lead to liver failure and possible death.

“I first realised something was wrong about six years ago,” said Katie, a senior teaching assistant at Carlisle’s Newtown Community Primary School who lives with her family in Bower Street, off Wigton Road.

“I was itching all the time. It was horrendous.

“I’d wake up bleeding because I’d been scratching so much. There was just no relief from it. I was itching so much that I got hardly any sleep. There were other symptoms too: jaundice, aching joints, dry eyes and mouth, and extreme fatigue.”

Also known as primary biliary cirrhosis, the condition can be particularly aggressive in younger women. With her symptoms barely responding to treatment, doctors told Katie her best hope was a transplant.

“I was put on the transplant list a week before Christmas,” said Katie.

“There’d been talk of it for about a year and a half before that, so I’d got used to the idea. I knew I couldn’t go on as I was.

“I was classed as a non-responder to [the available treatment]. Eventually, you can get to the point where your liver fails.”

When she answered that phone call on July 3, and heard the voice of her transplant co-ordinator Peter Robinson-Smith, Katie knew instinctively what it meant: her doctors had found a suitable liver donor.

Like everybody on the organ transplant list, Katie had a bag already packed. So after arranging for her father Bill to come over and stay with the children, Glenn drove her to the Freeman Hospital in Newcastle.

“It was scary but it was also a relief,” said Katie. “At that time of night, the roads were obviously very quiet. It was eerie.

“But this was something that we wanted to happen because we knew that, all being well, it would improve my life hugely. It was difficult not saying goodbye to the children. We always knew it would be hard.

“But we’ve always been positive. I’d been on the list for six months. The average wait time is 12 to 18 months, so I got my operation really quickly.”

Katie went into surgery at 1.30pm the following day.

Her operation lasted nine hours.

Yet even as she lay in intensive care, with her sedation wearing off over the next day, she realised that her illness was finally gone. “My earliest memory after the operation was of feeling better already,” she said.

“I didn’t have the itching any more.

“It was completely gone. Everybody said I looked better.”


A deadly wait

Forty desperately ill Cumbrians have died over the last decade because of the continuing shortage of donors.

The depressing statistic was revealed by the body that provides blood and transplantation services to the NHS to mark Organ Donation Week.

NHS Blood and Transplant wants families to talk about the issue.

In Cumbria, there are currently 45 people waiting for a transplant: 15 in Allerdale, five in Barrow, six in Copeland and 12 in Carlisle.

Anthony Clarkson, assistant director of organ donation and transplantation for NHS Blood and Transplant, said: “It’s a tragedy that people are dying unnecessarily every year in Cumbria waiting for transplants."


It has been a gradual recovery, with Katie spending six full weeks in hospital, returning at times for monitoring and treatment. She reached a recovery milestone 50 days after the transplant when she finally unpacked her hospital bag.

“I just felt so happy and pleased to be home – and healthy,” she said, beaming.

Gone at last were the terrible symptoms of her illness: the profound fatigue, the jaundice, and the intense itching. Katie is particularly thrilled that she is no longer prevented from enjoying her life as a mum.

She said: “It’s being able to do those little things that people take for granted; little things which are big things to the kids, like taking them to the park. It’s only as I look back now that I have realised how limiting my illness was.

“I feel like I’ve got my life back.”

Katie is acutely aware that her recovery has been made possible by the courage of a family who were confronted by the worst possible news: the death of a loved one.

She does not know the donor’s name, only that he was a 20-year-old and from Scotland. Asked how she feels about his family’s decision to allow his organs to be donated, she said: “It’s really difficult to put how I feel into words.

“He was so young.

“His family will be going through such a hard time in their lives and yet they were able to think of somebody else. Thank you isn’t a big enough word.”

Even before her transplant, Katie was a passionate supporter of organ donation.

Joining the NHS Organ Donor Register, or at least telling your loved ones you would like to be a donor should the worst happen, helps a family know what to do, she said.

Even better, said Katie, would be a change in the law that allows doctors to presume organ donor consent and asks those not willing to donate to opt out.

“The transplant has made a massive difference to Katie’s life,” said Glenn.

“She’s a million times healthier, and happier, and able to do more with the kids.

“My father, Ian Tinney-Hunt, suddenly passed away 12 years ago and we decided then as a family that we wanted his organs to be donated.

“They helped seven people, and we got letters of thanks. But it’s not until you’re on the receiving end that you realise just how important it is.”

Katie thanked the “brilliant” team at Ward 38 of Freeman Hospital, the Liver Department and Transplant Team; her employers at Newtown Community Primary School; her family, particularly Glenn and her parents Bill and Maureen, for their loving support; her friends – and most of all her donor’s family.

She has told her story so that others will now consider joining the register.

NHS Blood and Transplant surveys show more than 80 per cent of people support organ donation but only around 49 per cent of people have ever talked about it.

Research shows that women are 30 per cent more likely to start a conversation about organ donation than men.

To find out more about organ donation, log on to www.organdonation.nhs.uk

You can also call those who run the register on 0300 123 23 23.

Registration takes only a few minutes.