Sean's Story

Until the age of 38, Sean was reasonably healthy, working as a carpenter, but almost out of nowhere he became ill and eventually needed a double lung transplant.

Diagnosis

Here he explains why organ donation really is the ‘Gift of Life’ and how very thankful he is to his donor and their family.

“I worked as a carpenter and life was good until 2001 when after a week in hospital I was diagnosed with a genetic disease called Alpha 1 Antitrypsin Deficiency, or ‘Alpha 1’ for short. This disease affected my lungs and I developed emphysema as a result. I knew nothing about Alpha 1 or emphysema at the time.

“After further appointments and discussions with doctors, one of the things we were told was that I would eventually need a lung transplant. Needless to say we were in shock with the whole idea of having to deal with a long-term illness, and knowing that I would need a transplant some day worried me. I had never met anyone who had a transplant and believed my chances of getting one were very slim.

“I continued with my life as best I could, still working and raising our boys. As every year passed, I got sicker and sicker and often spent a month at a time in bed.

“I spent my days sitting in a chair watching the world go by. I was on oxygen 24 hours a day, but even with oxygen I gasped for every breath. Even going to the bathroom was a trip I had to plan. Having a conversation with someone was difficult and eating was a struggle because I would find it difficult to take in a breath. Sometimes I would have a coughing attack that would last for hours, at these times I thought I wouldn’t get another breath… maybe I wouldn’t see the morning and the handsome faces of my boys again. On more that one occasion the ambulance was called.”

Impact on family life

At the time Sean was diagnosed, his sons were only five and nine, and as he got sicker he was able to do less and less with them.

“Simple things like kicking ball in the garden became impossible. Everyone suffered as a result of my illness, it wasn’t just me. As time passed and the boys got a little older and wiser, I could see the worry and pain in their faces. There were times that that was as hard to deal with as trying to stay alive.

“I eventually had to stop working in January 2009, and Daria also had to stop working to take care of me as I needed help with almost everything – it started with needing help getting dressed, then help showering, been driven to hospital appointments, etc.”
In 2010, after being ill for nine years, Sean was put on the transplant list in the Freeman Hospital in Newcastle, England. This gave him new hope.

“I remember thinking ‘at least I am on the list’. A long year passed with no phone call, but on my birthday the first of three calls came. Sadly neither the first or second call resulted in me receiving my transplant.
 
“Both times my wife was devastated – we both knew that I was getting nearer to death and might not make it, but I kept thinking it just wasn’t meant to be those times. In March 2012, during Organ Donor Awareness week in Ireland, the third call came. We were afraid to hope but this time I got the transplant that I needed. It was a feeling that I can’t put into words.

“Every time the phone rang I was very conscious that someone’s loved one had died and that they were taking the very brave decision to consent to donation.  Not only was I gifted two strong healthy lungs, I was given the gift of life and have just celebrated my transplant’s second anniversary.”

Life since the transplant

Since receiving his transplant, Sean and his family’s life has changed for the better.

“I have been able to do so much, things that I thought I’d never do again. The first thing I did when I got home from hospital was walk around my garden and breathe in the wonderful fresh air.

“I can now attend family gatherings, go on a family holiday, go for walks and swim in the sea if wanted to. Most importantly, I can now kick ball and do other activities with my sons and create lasting memories.

“In 2013 I also attended the transplant games in Sheffield and won a silver and a bronze medal. There I met some fantastic people, hundreds of whom would not be here but for the gift they received.

“I have gotten my life back! There is not a day that goes by that I do not think of my donor and their family and say a silent prayer in thanks. Without them and the wonderful staff at the Freemans Hospital I most definitely would not be alive today. To others I would say if you are willing to accept an organ for yourself or your loved one then you should also be willing to give, so please sign the Organ Donor Register and let your family know your wishes.”