Tuesday 21 January 2020

'I donated half my liver to save my sister's life - I'd do it again' - Irish man (45)

When his sister needed an urgent transplant, running enthusiast Don Hannon didn't hesitate, despite the serious risks to his own health. Now he's back running again - this time, to inspire others to donate

Don Hannon and sister Therese
Don Hannon and sister Therese
Don Hannon pictured in Dublin's Marlay Park before setting off for his current 12-day run to raise organ donor awareness. Photo: Steve Humphreys

Chrissie Russell

In July 2016, Don Hannon was in peak physical health. The avid trail-runner from Sandyford in Dublin had completed a 261km stretch of the Wicklow Way a few months earlier and just the week before, he'd undertaken a gruelling 24-hour race. It felt very strange to now find himself lying on a hospital bed about to undergo a potentially life-altering operation.

"I remember the surgeon saying to me 'Don, this goes against everything I stand for, cutting open a healthy body," recalls the 45-year-old. "But the end goal was what we were both looking at."

That end goal was securing a healthy liver for Don's sister Therese (50). The mum-of-two suffered from a rare disease called Primary Biliary Cholangitis (PBC), a type of liver disease caused by damage to the bile ducts in the liver which then affect the organ's function.

It's unknown what causes PBC but it's thought to be linked in with the body's immune system. Fifteen years ago, Therese had had a transplant, but the illness had returned and now she urgently needed another donation to save her life.

"I knew she was sick but one day I got a call from her out of the blue saying 'I'm over in Birmingham and there's the possibility of doing a live liver transplant'," says Don. "I'd never heard of it before and my first reaction was 'but then I'd have no liver!' but she explained to me that it grows back. I was shocked at first but straight away my answer was 'yes. Whatever you need'."

Whilst live kidney donation is becoming more common in Ireland - 51 of the 190 kidney transplants last year were from living donors - live liver donation is not a procedure carried out in Irish hospitals. According to Professor Jim Egan, Director of the HSE Organ Donation and Transplant Ireland: "It's not done in Ireland because the standard donations cover the waiting list for liver transplant". In 2017, there were 61 liver transplants carried out in the country, all using livers from deceased donors.

Don travelled to Queen Elizabeth Hospital, Birmingham, one of seven transplant centres in the UK with a living donation programme. Don, who works as a running coach and builder, was only the 27th person to undergo a live liver donation at the hospital. Half his liver was removed and used to replace Therese's diseased organ. One reason the procedure is rare is because it can be difficult to establish a suitable match, but another is that it's an operation that comes with sizeable risks to the donor.

Don underwent six months of tests to establish whether he would be a match for Therese and physically able to endure the surgery, which in some cases can last for up to 12 hours. He also spent three hours with a psychologist going through his life history and addressing difficult questions.

"It was all the 'what ifs'," says Don. "What if the operation isn't a success? How will I feel about that? How would I feel if one of the outcomes was that I could never run again?"

Because the liver has a unique ability to regenerate, it's one of the few organs for which live donation is possible. But it is a considerably more risky operation than the more common live kidney donor transplant.

Research shows that live organ donation in liver transplants comes with between a one in 200 and one in 500 risk of fatality to the donor compared to around one in 1,700 for live kidney transplants.

For the person receiving the transplant (from either a deceased or living donor), there are also a host of potential issues. "Two of the most common complications after liver transplantation are rejection and infection," explains Dr Masood Iqbal, Consultant Hepatologist at Beacon Hospital and Liver Unit, St Vincent's University Hospital.

"There are risks associated with the procedure itself such as bile duct complications including leaks, bleeding, infection and hepatic artery thrombosis. There are also risks with the immunosuppressive drugs used to prevent rejection."

"They explained there was a chance I could die and asked how I felt my family feel if something happened to me," adds Don. He had to explain what was going to happen to his two children, Ellie (now 15) and Don (12). "They were young enough at the time not to have too much fear. They love their auntie Therese and understood what it was about."

Throughout the run-up to the operation, he was offered numerous chances to change his mind. "I had to laugh," he says grinning. "Everyone - from the anaesthetist to the surgeon and the nurses - kept saying 'if at any stage you don't feel happy then we pull the plug on this, even if it's 10 minutes before'. But I was never tempted. Therese and I have always been close. I could see how sick she was and she'd nearly died the Christmas before. She has two girls, a husband and a family and if there was a chance I could help her get well, then I'd have done anything for her."

In Ireland, the success rate for liver transplant operations is very good - a one-year survival rate of 93pc and a five-year survival rate of 80pc. Data from other countries shows the short-term survival rate for those who receive a liver from a living donor is slightly higher, but that may be because recipients don't have to wait as long for a donor and therefore don't tend to be as ill.

Don and Therese's operation was a success - but recovery wasn't as fast for Don as his sister. "The surgeon told me 'Therese will be fine. You put a healthy liver into a sick body and straight away it gets a big boost and the person starts to feel better'. Sure enough, I remember Therese coming into my ward, prodding me and calling me a big sissy!" He laughs: "She was great but those early days for me were pure hell."

Ironically, Don's peak physical condition left him in a worse state. "The doctor told me I'd actually have been better off being a little bit overweight because there would be a little bit more stretch," he explains. "Instead they'd had to cut through three inches of muscle and every time I moved it hurt." He lost 10kg of weight in four days, spent 14 days in hospital and then three months convalescing at his mother's home in Dublin. "I was helpless for about three months. I went from running 24-hour races to not being able to walk down the stairs."

Slowly things got back to normal. Within four months he was cycling again. Now, nearly two years on, he reckons he's back to 70pc what his fitness was before the operation and this weekend he set off to run the length of Ireland to raise awareness for organ donation.

"Therese was lucky," says Don. "But many people die waiting for an organ and a big challenge is simply making people aware of how the organ donation process works."

With his 12-day run, which kicked off on Saturday, he's hoping to encourage 1,000 people to become organ donors - you can track his progress along the 930km route from Ballycastle, Co Antrim to Castletownbere, Co Cork, on runningdonor.com.

"For two or three months afterwards, my sister would ring me at least once a week to say 'you saved my life'," says Don. "It's an amazing thing to hear and it's a hard thing to hear. I would laugh and try and shrug it off but I suppose that is what happened. The recovery was long but it passes and the end result is what matters. Therese is great now so I've no regrets."

Organ Donor Awareness Week runs until April 7. The key message is to carry an organ donor card and allow the code Code 115 to appear on your driver's license

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