It is a unique type of cruelty to allow people to suffer like this

OPINION:THERE ARE so many factors of care when it comes to cystic fibrosis in Ireland that highlighting all aspects is a challenge. The care of CF patients in single en suite rooms, as is practised internationally, is a given immediate need in our country, writes ORLA TINSLEY

When you live with cystic fibrosis, it is a package. From birth to death you need your treatment; you will always be dependent on the health system, from the moment you have that sweat test until the moment you die.

When people with cystic fibrosis reach the end stage of their illness, they need a double lung transplant to have a chance at survival. A double lung transplant means that the only hope you have to live is if someone else dies.

That person must be a healthy organ donor and their lungs must be suitable for you. I don’t need a life-saving transplant yet, but someday I will. It makes me sick to think that when I do, things will still be the way they are now. When I need a double lung transplant I will have to work hard to get it.

I will do what every other CF patient does. I will worry about keeping enough weight on, particularly when I am fighting difficult infections that cause me to burn more calories than the average person by just breathing. I will worry about how the people I love feel watching me go through this. I will worry about getting a match, about whether or not someone with the same size frame as mine, same blood type, same tissue match will die and enable me to live. I will worry about the feelings that must happen when you are called for your transplant after waiting for so long. The feeling that comes when you have been sitting on that bed in your theatre gown, mentally, physically and emotionally prepared. You know you may not get out of this alive and then you are told: “Sorry, the lungs were bad. Not today. You can get dressed and go home.”

I will worry about the other stuff, the things I shouldn’t have to worry about. Like how Ireland has one of the highest organ donation rates in Europe, with 21 donations per million people compared with 13.2 in the UK, and we have still only transplanted one cystic fibrosis patient since the Mater Hospital in Dublin started transplanting in 2005. There are two lists that people with cystic fibrosis can go on: the Irish one, at the Mater, and the Freeman Hospital in Newcastle.

The Government has a contract with Newcastle to perform a certain number of transplants on Irish CF patients every year. When the Mater started offering patients a place on the list near the end of 2006, we got pretty excited. There was a little bit more hope for the people with CF who were exhausted, permanently hooked up to oxygen all day because they could no longer breathe on their own. Two friends of mine waiting for transplants went on the Irish list and were told: “I promise you, you are next.” Neither of my friends got transplants. We have no choice in this situation, we have to be dependent on the system. But those of you who are working in the system, if you know what’s going on, you have a choice.

From 2005-2008 the Mater was unavailable to meet the CF Association of Ireland on their own, to discuss the issue of double lung transplants that is unique to CF patients. Initially people with CF were being told that they could go on either the Newcastle or the Irish list; they then were being told that they could only go on the Mater list. It then seemed that the more complicated cases, such as those who would need both a double lung transplant and a liver transplant, were being referred to Newcastle, while the less complicated cases were put on the Mater list.

At a meeting of the Irish Medical and Scientific Council it was said by the Mater that people with CF always had a choice about which list to go on. This was news to people with CF, staff members working with them and their doctors. The policy has been interchangeable, so you can see how someone who is dying while waiting on a transplant list could get frustrated. It is a unique type of cruelty to allow people to suffer like this. Irish CF patients are waiting on a list that is effectively inactive and the rules of this list have changed in unclear ways over the past three years, leaving the situation even more complicated for all patients, families and care-givers involved.

Spain has the highest organ donor rate in the world. The Spanish Transplant Authority are world leaders in transplant and they recommend that to have an efficient transplant team, 20 transplants must be performed a year. Ireland has performed only 20 lung transplants since 2005. 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.

The Cystic Fibrosis Association of Ireland has met the Health Service Executive three times in the last few months and is awaiting the publication of an audit on all intensive care units that was paid for by the association. The report, which was meant to be published in March of this year, looks at the process of organ identification, recovery and transplant management in our intensive care units. We need to see that report. There has been only one double lung transplant of a CF patient in Ireland, and that happened in July 2007.

Ireland is the only country in Europe that performs more single lung than double lung transplants, and single lungs are no good for CF patients.

There were 84 successful organ donations in Ireland in 2007. Out of these donations, five single lungs and four double lungs were retrieved. In Belgium they have a 35-45 per cent retrieval rate of double lungs from multi-organ donors. If Ireland could even get to 30 per cent of that it would mean 23 double lungs for the 20 to 30 people waiting in Ireland. Instead Ireland has done 20 transplants in three years.

In Belgium, if the lungs are looking bad they are X-rayed and given new treatment. Eight out of ten times this treatment is successful and the lungs are available to be transplanted. In a situation like that there is a small window of time, it is a race against the clock, but Belgium does it successfully. In Ireland, patients who have been transplanted in Newcastle return to the Mater for their aftercare because they still need to treat the other aspects of their CF, such as diabetes, digestive problems and other issues. A person post-transplant is also on numerous anti-rejection drugs and most have close contact with their hospital for immediate care when necessary.

At least three patients I know do not attend the Mater for their care post-transplant – instead they attend St Vincent’s. These people are going back to the National Referral Centre for CF, where people like me, to avoid whatever bugs are floating in my room, sit in the coffee shop, or take a walk outside. I still have bacteria in my lungs, but they don’t. It is a danger to them to have to go back to Vincent’s, but they feel they have no choice.

We have no choice in whatever politics is going on here, but we should not have to suffer for whatever inadequacy is causing this situation to continue. If the lungs cannot be procured properly and are being wasted, if the transplants are not being done, if we are dying waiting up to a year on the Irish list, then we need a change.

It's like some twisted version of Waiting for Godot.Being on a transplant list means you have to stay put, you have to face what is in front of you, but you do not always have to die.

The people with CF waiting on the list right now know that the longer they wait the greater the chance that they will die waiting. If Ireland cannot provide CF patients with transplants that will save their lives, then those waiting on the Irish list should be placed on a list in a country that can.