No need for the Lotto, ‘we have everything we want’

I remember being in bed in Crumlin hospital with tubes stuck up my nose when I was a child and feeling lonely when my visitors went home. I suppose having cystic fibrosis (CF) always had an impact on my life but when I was 12 my condition started to get worse.

I was first put on a waiting list for a lung transplant in 2000. By the time I had the transplant last January I was 29 and on oxygen 24 hours a day.

I grew up in Inchicore. I am an only child. There wasn’t anyone with CF in the family. I know people can carry the gene and not be affected.

As a child I got used to nebulisers, medication and physiotherapy to clean the gunk out of my chest. I had an over-night feeding tube in my chest. A lot of CFs get malnourished.

I didn't really get to go to secondary school because I was in hospital for long stretches. Later in life when I was in my 20s I did a few PLC courses and I went to college for two years to study computers. I also started to help with soccer training for local kids.

Back on wai

ting list
My condition wasn't as bad from my mid- teens to my mid-20s

and I was actually taken off the waiting list for a while. But then I deteriorated again. I had been back on the list for seven years when the call came.

I got really sick last November. Ciara was pregnant with our first child and I think I did wonder at the time “How are we going to do this?” I had to go into St Vincent’s Hospital. I came home for two days at Christmas against doctor’s advice. I had been on oxygen over-night but then I was on it 24 hours a day. I was carrying around a backpack of oxygen.

There are lots of things that people take for granted which you can’t do when it’s bad. I had to stop going to college, stop training the kids. Simple things like walking up the stairs, or having a shower or even getting dressed are just exhausting.

If you are going anywhere, you have to give yourself so much time because it takes really long to get ready. You are so breathless, it’s hard to even talk.

I am an optimistic person but I did have moments of weakness when I wondered is it going to happen or will I spend my life walking around with oxygen?

When I got the call, it was actually the sixth one. It just did not work out the first five times. The first time it happened I got a second call 10 minutes later saying we are very sorry. I assume it just was not a match for me. I hadn’t even left the house that first time.

The other times I was in the hospital ready, prepped and waiting to have the anaesthetic. You have to be, just in case it does work out. It happened four times last year. Two of the calls were within a month of each other. I had the gown on and was ready to go. I actually stayed optimistic. I feel things happen for a reason. Somebody else obviously needed it more than me.

I was in St Vincent’s when I got the call the last time. I actually missed it. I had been on the phone and I put down my mobile to wash my hands and the phone rang but I didn’t get to it on time. I recognised the number of course.

The co-ordinator rang back and said: “You know the drill. There’s an ambulance waiting outside to bring you over to the Mater.” Ciara was on her way home from her pregnancy yoga when I rang to tell her. The staff in St Vincent’s were all saying “Congratulations, you are going to have a great life.” I told them, “I’ll probably see you tomorrow.” There had been so many false alarms.

Of course I told my mam immediately. I told five people the night before but most of my family and friends woke up to a text and at that stage I was already under the knife. One of my friends told me he cried his eyes out when he read the text.

Some of my friends and family had been annoyed when it did not work out the other times but my mam was like me. If a doctor comes in and says you need to worry, that is when I start to worry, but not until then.

I think the surgery lasted for eight hours.

Immediate difference
I honestly noticed the difference the minute I woke up. It took a while to sink in. Then – maybe it was the drugs, maybe I was overwhelmed – but suddenly I cried my eyes out. My physiotherapist said, "Oh sorry did I push you too hard?" I said, "No, that's just it. It's not hard."

They tell you to give yourself a year to recover from a transplant. Ella was born a few weeks after it – a month early. Ciara and I thought we would have a little time to get over the transplant but Ella had other ideas. Poor Ciara was heavily pregnant and she was running around looking after me.

I do feel exhausted. Naturally the body has to adjust. But I can’t believe the things I can do now. I can walk up the stairs without getting breathless. I can do normal things.

I used to find it hard to talk too long but the other day I walked from Laytown to Bettystown and was talking on the phone all the time as I was walking. It’s only two kilometers but that’s a very long way for me.

I honestly don't know if I will ever be allowed to know anything about my donor but sometimes it seems that not a moment goes by but I don't think of that person and that family.

Gratitude

I get upset sometimes. In my heart I am always with the family. I don't know what would have happened if I did not have the transplant. I cannot tell you how my life has turned around. A baby and a life to look forward to. I cannot put it into words, the gratitude. I rang the Irish Kidney Association and told them I wanted to help to promote donor awareness.

I can hold Ella. I can feed her. I was saying to Ciara, we won’t do the Lotto anymore because we have everything we want. We live in Laytown now and the beach is just across the road. I can look forward to the summer now to walking there with Ciara and Ella.