Last year was a bad year for heart transplants with only five of them carried out in Ireland, says Seamus Eager, who has been on the heart transplant list for two years. This is his story, as told to Fiona Tyrrell.
I’VE BEEN dealing with heart problems since 1986, when I was diagnosed with progressive coronary artery disease. That’s a nice way of saying blocked arteries.
The gene for heart disease is in my family. My father died of the disease at the age of 61 and my mother at the age of 74. One of my brothers has had a bypass and my other has had stents in.
When I was diagnosed I was put on the usual medication. Five years later, at 43, I had a bypass. It all went well and I was able to continue with my life.
I was always very fit. I have been involved in sports all my life. I played for Shamrock Rovers in the 1960s and 1970s and have managed and coached football teams since then.
Then, in 2001, I developed what seemed to be a simple cough. The cough got worse even after a course of antibiotics. My GP diagnosed cardiac asthma and I was sent for a variety of allergy tests.
I had been putting on lots of weight for no apparent reason; I had trouble with my breathing, I was wheezing, was not able to get to the top of a hill without baying like a donkey and having difficulty sleeping.
This went on for five months. Then, after I had difficulty breathing on a flight home from holidays, I went to the Blackrock Clinic. I was told that, instead of being a cardiac asthmatic, I had been retaining fluid, which had been entering my lungs and the area around my heart.
The fluid in my lungs was cleared pretty quickly with a strong diuretic, but over the five months a lot of damage had been done to my heart. Technically, I had been experiencing heart failure, and that’s what I’m paying for now. Sometimes I get angry about the damage to my heart in this period. I recall how well I was beforehand, and feel the problem should have been identified earlier.
I was discharged from hospital with a warning from the doctor that once you have had heart failure you are likely to run into major difficulties at a later date.
The major difficulties hit in 2006. I started to pick up every cold and virus going. I was referred to Freddie Wood at the Mater hospital and put on the heart transplant list as an early listing. That means I was in reasonable shape at the time, but if the right heart for me came along and another person in the same category but in a worse condition did not require it, I would be eligible.
When I first went on the list, I was optimistic. I was sure I’d get a transplant by Christmas. At that time – and I don’t mean this in a bad way – I was in competition with 22 others. It took me a long time to get to grips with being on the list. I had been active all my life. As I got sicker it all started to change.
Cardiomyopathy is my problem. It means that my heart is enlarged. When I did my first VO2 test in 2006 I was told my heart and lung capacity was half what it should be. Each time I do that test now my capacity has deteriorated by another 10 to 15 per cent.
I got a call to come in to the Mater for a potential transplant last May. It was the day of Trapattoni’s first game as Irish manager, and I had been making my way to Croke Park to see the match with my brother.
When I went in it was all go, but that night I was told I wasn’t the right match. Two other people were called in, and as far as I know none of them were matches so the heart went to the UK. I am not one given to depression, but I felt very down after that.
The transplant co-ordinators at the Mater are very good. They are in contact with me on a regular basis.
For some reason you get notification of a potential heart in the late afternoon or early evening. When the transplant co-ordinator calls, the number comes up as a private number on my phone. Any time I get a phone call from a private number in the afternoon I have to pause for 30 seconds to gather myself before I answer it.
It is difficult when you are feeling unwell and nothing is getting done. Last year there were only five heart transplants carried out in Ireland. Normally there are between 13 and 16.
I understand that the number of donors was not too bad last year, but the amount of usable hearts was low. People around my age have not been looking after their hearts. With a heart, unless the doctors feel there is a 90 per cent chance you can come out of the transplant procedure, they won’t proceed.
The awful thing is that someone has to die for me to live. Most hearts are donated by people who have suffered brain damage and who have been on heart and lung machines, which are then turned off.
For those left behind, it is difficult enough to contend with that reality without having to consider organ donation. If the decision had been made by the departed person beforehand, I think it would be a lot easier.
In Ireland there are over 600 people on waiting lists for organ donations. I’d like to see a national registry of people that wish to become organ donors. As it is there is no system.
Earlier this month, the Department of Health launched a public consultation process on organ donation consent, inviting the public to give their views on the subject of opt-in, opt-out and mandated choice in relation to organ donation after death.
It seems to be taking forever to draw up new legislation on this issue. I feel it would be much better to discuss the matter with experts working in the area, and to organise a register of organ donors.
I am very vulnerable to colds and viruses. I ended up in Blackrock again on St Stephen’s Day with a bad dose and had to get intravenous antibiotics.
Because I was so unwell at Christmas, my medical team are investigating whether I need an artificial heart. That would require open-heart surgery.
Life is not good. When you are on the list you really don’t have a life. You are just waiting. I am not allowed travel outside the country and if I leave Dublin I have to tell the transplant people where I am going.
Sometimes I ask, “why me?’’ It’s not just me who is affected. My wife and child have to live with this as well. But I am blessed with life-long friends who I can talk to when I am down.
I am still in the auctioneering business, but I am practically desk-bound. From mid-2007 I have only been able to play golf when a buggy is available. I have taken a year’s sabbatical from the golf club, because I can’t play. I can’t coach the football because I haven’t the breath to keep up. I still manage a team.
I stand on the sideline and watch it all going on.
- Look Where The Talking Has Led Us, a collection of poems by Seamus's brother Kieran Eager, is available from the Mater Foundation at materfoundation.ie for €10. All proceeds go to the Mater's Family Heart Screening Clinic, screening all family members who have lost a loved one to Sudden Adult Death Syndrome
- If you have had a health experience – good or bad – you would like to talk about, please contact: healthsupplement@irishtimes.com