Targeted approach needed to increase organ transplant rate

‘It’s 9.45pm and the phone rings….the transplant co-ordinator is on the other end of the phone… I start to replay her first words to me,‘we have a new liver for you’.

“Suddenly I feel the adrenalin running through my body. I’m now beginning to realise that this is THE call….My life was in the lap of the gods and the skills of the surgeons. There was nothing more I could do.”

This is how 48-year-old Anna Daly from Co Donegal describes the moment she received the news on September 3th last year that she was about to have a liver transplant at St Vincent’s University Hospital in Dublin. This was to be her second liver transplant.

At the age of 16, Daly was diagnosed with autoimmune hepatitis, a serious condition where the body’s immune system attacks the liver. Untreated autoimmune hepatitis can lead to scarring of the liver (cirrhosis) and eventually to liver failure.

In 1990, when she was living in the UK, Daly underwent her first liver transplant in King’s College Hospital in London at the age of 25. Some 22 years later, in September 2012, she had her second transplant in St Vincent’s.

Daly’s experience of undergoing two life-saving procedures 22 years apart gives a valuable patient perspective into the advances in liver transplantation surgery over the past two decades.

In 1990, when she underwent her first liver transplant, Daly spent 3½ weeks in hospital, with five days in intensive care. In 2012 her hospital stay was shortened to 15 days, and she spent just over 24 hours in intensive care. She also recalled that the modern operating table of 2012 was considerably more comfortable.

Consultant surgeon Prof Oscar Traynor is one of the lead surgeons with Ireland's National Liver Transplant Programme.

Based in St Vincent’s University Hospital, this year the programme celebrates its 20th anniversary. While some liver transplantation was successfully taking place in Ireland in the mid-1980s, in 1993 Prof Traynor and consultant surgeon Mr Gerry McEntee performed the first transplant under Ireland’s new national programme.

In 1993, the National Liver Transplant Programme carried out just 14 transplants. Today it averages about 60 a year.

To date, the liver-transplant team of almost 100 dedicated healthcare professionals at St Vincent’s have carried out 790 liver transplants for 675 patients.

“Some patients have to have a second or third transplant, that is why there are more transplants than patients,” Traynor explained.

Approximately 60 adults in Ireland every year will require a liver transplant due to a number of conditions and diseases that cause irreparable liver damage.

Unlike dialysis, which can provide some patients who need a new kidney with precious extra time, sadly there is no such option for those awaiting a new liver. According to Traynor, this is why it is crucial that patients get a liver.

“Some patients do die on the waiting list. In Ireland we would have between 75 to 80 donors a year, but they wouldn’t necessarily be a liver-matching size and blood group for every patient on the waiting list at a particular point in time.

“Some people, particularly small females in the 40 to 45 kg weight range, can be quite difficult because you can’t put a big liver into a small person. So they can wait a long time, and if they are very sick they can sometimes die,” says Traynor.

According to the Dublin surgeon there are between 20 and 25 people on the waiting list for a liver at any one time, and the good news is that most of them would be transplanted within a year.

Some like Daly can be lucky; she was on the waiting list for a number of weeks in 2012 when she received her second chance at life.

However, in the months leading up to the 2012 transplant Daly’s health was deteriorating rapidly. She had no energy, her skin had turned a greyish yellow and she developed ascites, a hugely uncomfortable condition and side effect of a failing liver where fluid builds up in the stomach.

Daly describes herself as “looking around nine months pregnant” and she had to have regular procedures where doctors would drain fluid from her abdomen. At one stage seven litres were removed.

She also began to develop a distressing condition called hepatic encephalopathy, a brain disorder that can occur as a complication of chronic liver failure, which left her feeling very confused.

According to Traynor, in 1993, when the transplant programme was first established, Ireland had the second highest donation rate in Europe at 20 per million of the population. However, Ireland is currently “way down the league”.

This is not because donor numbers are falling, they have more or less remained the same, but rather because other countries have increased their donation rate through a targeted approach to organ donation.

“In Spain, for example, the donation rate now is 36 per million of the population, so it is almost twice our rate. That is because they have a very targeted approach towards promoting organ donor awareness and that pays off,” says Traynor.

He said that organ donor awareness week, which runs all this week ( March 30th to April 6th), was an important event to help raise awareness of, and promote, organ donation. However, he added that a lot more could be done to raise public awareness.

The importance of raising awareness of organ donation was the main driver behind Daly’s decision to share her experience as a double liver transplantee. She paid enormous gratitude to her husband Brian, her daughter and all the staff associated with the liver transplant programme, as well has her own GP. She was “very thankful” to both the donors and their families. “It is incredibly generous of the family to be able to do this because it means so much. It had given me another life. I have had a lot from life and this is a huge generosity.”

Daly said she would like people to discuss organ donation with their loved ones before a tragic incident forces the decision on heart-broken relatives.

“The message for me is to get people to talk about this issue not at a time when somebody is seriously ill. Obviously that is going to be the time that it will be broached with them, but it would be really good if people…talked to their families about it. [That way] it doesn’t make it such a horrendous decision for the family to make at a time when they are losing somebody.”

National organ donor awareness week, organised by the Irish Kidney Association (IKA) and supported by the Irish Donor Network, runs all this week until April 6th. For more information please see www.ika.ie

According to the IKA, almost 3,000 people in Ireland are enjoying extended life away from hospital as a result of receiving organ transplants. There are currently over 600 people in Ireland waiting for life- saving organ transplants including heart, lung, liver, kidney and pancreas.