ANALYSIS:Double lung transplants for Irish cystic fibrosis patients is a lottery with a waiting list that doesn't make sense, writes Orla Tinsley
I'VE WANTED to write about the transplant situation in this country regarding cystic fibrosis patients for a long time. It's a difficult and controversial subject, especially when you consider that since the State's first double lung transplant of a person with CF, that of an 18-year-old in Dublin's Mater hospital in 2007, there has been no other CF transplant performed in Ireland.
The Irish transplant list continues to grow while the reality is that those on the list for the Freeman Hospital in Newcastle have a much greater chance of receiving the vital transplant operation than those who are waiting on the Irish list.
Apart from having CF myself, I have friends waiting for transplants and this makes the false hope and confusion surrounding what is effectively an inactive Irish transplant system difficult to contemplate. My friends are among the 25-30 young men and women in Ireland hoping for a chance to start their lives again with a transplant operation.
While many people with CF live fulfilling lives, studying and working in Ireland or abroad, a transplant is necessary at the end stage of the illness when there is no other option available. The "end stage" means a variety of things but mainly that your quality of life is severely diminished. It means that your organs are failing, you are zapped of physical energy and you are dependent on a variety of machines to live.
The only chance of survival at this point is a double lung transplant operation. To get this you have to battle to stay healthy or you risk being taken off the Irish or the Newcastle list. Those who are successful also face the risk that they could die during surgery.
When a CF patient needs a transplant they are referred automatically to the Mater hospital. If their needs are assessed as being more complex, they are then referred to the Newcastle list.
I knew two people on the Irish list, a young woman and a young man, both in their 20s. The young woman went on the list in 2006 and the young man in 2007. The man went on the list willingly and had great belief in the Irish transplant system. His understanding was that he was "the next person in line to get a transplant".
The young woman originally wanted to go on the Newcastle list, reasoning that the English hospital had more experience in transplant operations. But in the event, she decided on Ireland after extensive discussion with her team. She said it seemed easier to get a transplant as she was closer to home.
I spoke to her mother at the time. She said that they had been promised her daughter would be next on the list.
Both patients who were on the Irish list died awaiting transplants.
Three years ago that young woman and I shared a room in hospital with another female patient who also needed a transplant. That year she received one in Newcastle and now attends college full-time, has a part-time job and has competed in the National Transplant Games. It is impressive stuff seeing someone reclaim their life at 20 but she is one of the lucky few.
In the past couple of years I've written about CF in this newspaper and as a result people have spoken to me privately about how they feel regarding transplants in Ireland.
One young woman with CF contacted me once and said that she felt "under pressure" from her medical team to go on the Mater list. She had more confidence in the Newcastle list and flew to that city for assessment but was deemed unsuitable for transplant at the time.
Numerous issues can render someone unsuitable whether it is degree of health, infection, weight, psychological state or other factors. And while the Newcastle system refused her, Ireland still felt able to offer her a place on their list. That the Mater hospital would take on a patient for transplant that Newcastle deemed unsuitable makes no sense.
CF patients need double lung transplants because their lungs are riddled with bacteria and severe lung damage because of cystic fibrosis. We need double lung transplants because bacteria grows in both lungs, so a single lung transplant would only deal with half of the problem.
However, Ireland is the only country in Europe that performs more single lung than double lung transplants. There were 84 successful organ donations in Ireland in 2007. Out of these donations, five single lungs and four double lungs were retrieved. One Irish CF patient was transplanted in Ireland that year and six Irish patients were successfully transplanted in Newcastle.
It is estimated by the Cystic Fibrosis Association of Ireland (CFAI) that at current rates it will take 36 years to complete the transplants on the Mater hospital list, which they say is an absurd proposition "given the life expectancy of the average person with cystic fibrosis". It's worth comparing the situation internationally. The Belgian system for lung transplants is one of the best on the continent with 94 successful transplants in 2007. In the French region of that country where they have a population of four million people - ie similar to our own - 13 single lungs and 27 double lungs were successfully transplanted.
The Spanish Transplant Authority, which at 34.4 per million people, has the highest organ donor rate in the world, recommends that to have an efficient transplant team, 20 transplants must be performed a year. The Belgian system started transplanting in 1993 and preformed 36 lung transplants in their first three years.
Ireland, on the other hand, has performed only 20 lung transplants since 2005. Out of these lungs 16 transplants were single while four were double. CF patients waiting for a double lung transplant have to wait in excess of 18 months on the Mater and the Newcastle list. In Belgium the wait is seven months.
According to Godfrey Fletcher, chief executive of the CFAI, when Belgium introduced specially trained transplant co-ordinators into each of their intensive care units to monitor and maintain organs pre and post operation, the number of organs retrieved increased.
With closer monitoring of patients and special patient care in these vital hours, lives were saved. Ireland is currently undergoing an audit of all intensive care units costing €60,000 and funded by the CFAI from 2006. According to Fletcher: "We do not have transplant co-ordinators in any ICU."
Fletcher also described the "strained" relationship between the Mater and his organisation during the first two years of the Irish CF transplant list. The hospital refused to meet the association without other transplant representative groups being present, despite being aware of the difficulty of the situation. While they have since met, many aspects are unclear and there is a lack of communication between those providing the services and the CF patients who need them.
Cystic fibrosis patients need to know whether they will get a lung transplant when they need it. Those on the list know that the longer the wait, the greater the chance that their health will deteriorate. Irish CF patients do not know where to turn and no one is providing any real answers. In the three months after the only CF patient transplant in Ireland, two patients were called for transplant but the lungs were then thought to be unsuitable. It's not surprising that the Irish list is viewed as an abject failure by many in the wider CF community.
So what needs to change? Well, for a start we need someone in authority to provide answers to our questions, and we need a properly resourced, independent transplant body to co-ordinate all aspects of donor identification and transplant co-ordination.
The CFAI also recommends that "properly resourced transplant teams made up of retrieval teams and transplant teams are made available. These need to be available 24/7 365 days a year and they need to have motivated senior surgeons". This will ensure that every opportunity is taken so that transplant takes place.
Ireland has one of the highest organ donation rates in Europe with 21 donations per million people compared with 13.2 in the UK. Even if we had a 50 per cent retrieval rate similar to European transplant leaders in Belgium and Austria that would mean 30-40 lungs, tantalisingly close to what we need in Ireland.
This is not about the law or enough organs being donated, it is about the process of donation, retrieval and transplantation being properly resourced and organised.
As I write, people with CF are still waiting for seven of the 15 single ensuite rooms that were promised last February. We have eight isolation rooms available for up to 25 CF patients that are in the National Adult Referral Centre at St Vincent's in Dublin at any given time. Usually these eight beds are taken up by those who need them most, those with extreme pathogens, or those on the transplant list.
If a person at the end stage of their CF is lucky enough to be in one of those rooms, then what? They wait in hope and every day that a transplant does not happen in Ireland a little bit of that hope dies.
This is not a plea for money or buildings or the kindness of strangers. This is a request for a reality check, for common sense and compassion to enter the equation.
We deserve more than whatever twisted bureaucracy enables this list to exist. Having patients on a list that is effectively inactive is a unique type of cruelty.