Improved procedures and increased awareness have led to more transplants, writes BRIAN O'CONNELL
FIGURES RELEASED by Beaumont Hospital in recent days show that Ireland is making steady improvements in organ donation and transplant procedures. The statistics show a significant rise in the number of kidney, liver, double-lung and heart transplants and donations in the past year.
In 2009, 154 donor referrals took place in Ireland; an 8 per cent increase on the 2008 numbers. These figures capture all the times hospitals throughout the State discussed organ donation with relatives and subsequently contacted the organ procurement services.
The referrals came from 24 individual hospitals, out of a possible 40 involved with the donor scheme, and of the 154 referrals, 90 resulted in organ donation, leading to transplant. Coupled with this, last year also saw the number of “living” transplants increase to 18, compared with just 10 procedures in 2008 and five in 2007.
Some commentators argue that these figures reflect the fact that there is increased awareness in Irish society of the importance of organ donation.
Liver transplant numbers increased from 59 in 2008 to 68 last year. Heart transplants numbered 17 in 2009, up from 10 the year before.
Perhaps the area where improvement is needed most is in lung procedures, with double-lung transplants numbering four last year and single- lung transplants dropping from seven in 2008 to just five in 2009. Overall though, the numbers represent significant improvement and haven’t been as high for more than a decade.
Mark Murphy, chief executive of the Irish Kidney Association, says there is much cause for optimism at the increase in figures, but is concerned at proposed EU regulations in the area of organ donation, and how that may impact on improving patterns in Ireland.
“The EU is going to legislate on organ donation and transplantation. They have issued a draft directive and now also issued a set of amendments to the draft directive, some of which I’m very unhappy with,” Murphy says.
In particular, he believes that the issue of living transplants, where significant progress was made in Ireland in the past year, has taken a backward step with these new EU directives.
“What they are suggesting is that living transplantation is only done as a matter of last resort. This is such old thinking and there is no credibility in it.
“Living transplantation is done pre-emptively in some cases, before patients need dialysis. It has proven that it can lead to better results and quality of life. I was very happy with the directive in draft format, but the honing in on living transplantation as a last resort is ridiculous.”
Leaving aside the wider debate, what of the actual patients who benefited from organ donation and how have their operations affected their daily quality of life?
Almost 10 years ago, Jacinta Murray, a mother of five from Knock, Co Mayo was diagnosed with pulmonary fibrosis. Last August, her condition deteriorated and she was placed on oxygen. Eight weeks ago, Murray had a lung transplant.
“I remember years ago, before I got ill, picking up a leaflet about lung transplants and thinking it would be terrible if that applied to me,” she says.
Little did I know that nine years later I would be overjoyed to be put on the transplant list.”
In the short time since her operation, Murray says her quality of life has changed dramatically. “I’m here now clearing out presses, and I have enthusiasm for doing things like that again,” she says.
“Towards the end I was conscious that if I didn’t get a transplant that the next cold I got or the next set back could be it. I will be 60 in April and I wasn’t really sure I would be here to see it. It wasn’t something I went on about because I believe in denial as a useful psychological tool. But I knew it from my husband.
“It sounds strange, but we had an argument last week and it was relief. Nothing major. Just a disagreement. I thought, this is great, not being treated with kid gloves anymore. Life is coming back to normal!”
Everyone in Murray’s family now carries an organ donor card, and she says she is so grateful to the family of her organ donor. “My whole family are aware of the enormity of the gift really and it’s very hard to say thank you for something like this. Those are just words. I have a deep, deep appreciation.”
Deborah and Patsy Kett are a Co Clare couple who have a keen interest in the progress of the Irish donation and transplant system. Their six-year-old daughter Hannah was diagnosed with cystic fibrosis (CF) and the prospect of a transplant in the future is a very real one. The family has set up a website, www.hannahsbags.com, in order to raise awareness around both CF and organ donation.
Deborah says they are concerned for the future of their daughter, given the low levels of lung transplants in Ireland and the need for greater public awareness of the links between diseases such as cystic fibrosis and organ donation.
“I would always have carried a donor card because I suppose I would have been aware how important organ donation is,” says Deborah. “But honestly, I thought the system was better than it is. We have only learned fully about it recently.”
Deborah recalls an event the family staged to help raise funds for cystic fibrosis facilities. “When Hannah was diagnosed, we would have become more conscious of the situation of organ donation in this country. From our own experience, we saw it first-hand when we ran a golf classic as a fundraiser for CF. We brought along 200 or 300 Irish Kidney Association donor cards. Five people took them. They were completely ambivalent towards how organ donation links in with CF.”
The Ketts say that through media campaigns and their own efforts, raising awareness is key to maintaining recent improvements in organ figures. Naturally, they are anxious about the future.
“We’re terrified,” says Deborah. “As parents we’re doing all we can to raise awareness. We try not to talk about the future too much though.”
Jacinta Murray and the Kett family will feature in The Gift of Life, a new three-part series on TV3 which starts on Thursday at 10pm
TRANSPLANTS: WHO NEEDS THEM AND WHY?
JIM McCARTHY, DIRECTOR OF CARDIAC SURGERY AT THE MATER HOSPITAL, DUBLIN
“Typically, the people who need transplants are, as you would imagine, those with end-stage heart or lung disease. When we talk about end-stage heart disease, it’s patients who have severe coronary heart disease and their hearts are in heart failure. All the medicine and stents and bypasses have either been ruled out or done and the patient’s heart is expanded and not working.
Patients with cardiomyopathy, or heart muscle disease, also need a transplant. Sometimes this can manifest itself suddenly. A patient could be 20 years of age, going along fine and then pick up a viral infection, presenting as a flu-like illness. Three weeks later they may need a heart or they are going to die.
There are never enough hearts for the numbers of people who need them, and globally there is a huge supply and demand problem. For example, it is estimated that 100,000 people in the US alone could be put on a heart transplant waiting list every year. The number of procedures carried out there is 2,000 annually. If a patient has a heart transplant today, the statistical chances of being alive in 10 years’ time are just over 50 per cent. Most of these patients’ life expectancy is less than a year otherwise.
Recently, we carried out our 25th lung transplant. Lung transplants are not as successful as heart transplants. The survival rates are far from ideal. But for the patient, especially those who are really starving of oxygen, a transplant immediately transforms their quality of life. Overall, I think these are complex operations and we are improving all the time.
Think about it: a heart is taken from someone, transported across the country and given to someone else. Ninety per cent of those transplant patients survive. What is mind-boggling is how anybody survives it. It is a huge feat of modern medicine.”
ONE MAN'S STORY: SEAMUS EAGER - 12 MONTHS ON
"This time last year I was waiting on a heart transplant and was interviewed about life on the waiting list for The Irish Times. I had no idea when I was going to be called.
I was in the Blackrock Clinic six or seven times before I was transplanted. I needed a heart as I had an enlarged heart that couldn’t function.
Several months after the article I got the call for the transplant. My initial reaction was of total happiness. I knew I was so sick and didn’t have a lot left in me at that stage. I wouldn’t have survived the year without the heart transplant. I was in hospital for 12 days after the transplant. The only thing I remember was the nurse waking me up back in the ward and telling me I was okay. A week-and-a-half later, I was told on a Sunday I was going home the following Tuesday.
I broke down and cried. I had gone from being extremely sick, to being allowed home and told I was quite well. It had a huge effect on me. So far it has been a success, I have dips but they are related to getting the medication balance right. At the moment I’m walking 5kms a day and had my first game of golf in a long time last December. I’m back in work running my own business and looking forward to the heart and lung transplant games in Sweden in June, when I hope to compete. I’m hoping to play golf and table tennis.
There were so few heart transplants last year, yet it was a large improvement on the year previous. I am writing a letter to the donor family and I don’t know how to start. How can I start thanking them for giving what they have given me?
When I sit down and think about it, sometimes it just hits me and it can be hard to fully comprehend. I can’t stress enough the benefits of carrying a donor card especially for the people currently on a waiting list.”
