Some of us may think it’s not an easy conversation to have with our loved ones - yet being honest about our thoughts on donating our organs is so important, as Londonderry woman Suzanne Duncan explains
Mother-of-two Suzanne Duncan delivers her message with simplicity and directness.
“All it takes it five simple words - ‘I want my organs donated’,” says the 41-year-old Londonderry woman.
And there are few people who know as much as she does that being brave enough to take that step and tell your family you are serious about donating your organs, can literally mean the difference between life and death for somebody.
In her situation, that someone was her courageous husband Andrew, who lost his fight with heart failure just three weeks ago - and less than eight weeks before Christmas.
The 38-year-old - who lived in the city’s Waterside area with his wife and their children Aimee, 15, and Robbie, 13 - was just 23 when he diagnosed with a hereditary condition called dilated cardiomyopathy. He had been on the waiting list for a heart transplant since 2011, but time ran out.
Even more tragically, Andrew’s father also died from the condition, and his son and daughter have been identified as having the same heart condition gene, which means they could go on to develop it as well.
But brave Suzanne, who was Andrew’s full time carer right up until the moment he died in her arms on November 16, remains determined to campaign to urge people to tell their loved ones if they want to be donors, so that more organs can be readily available for people like Andrew.
“To people who haven’t thought about donating their organs - I would say, watch Andy’s video,” says Suzanne, referring to a video which Andrew made and can be viewed on YouTube. “See then what needing a heart does to you.”
Andrew formerly worked as a production operator in technology company Seagate. Then in 1999 he was diagnosed as having Crohn’s disease, and a year later, started displaying symptoms such as a “really fast heartbeat”, relates Suzanne.
Doctors said at once that he was suffering from dilated cardiomyopathy, a condition that enlarges the heart muscle and makes it weaker.
“We knew it was hereditary, but never did I think that Andrew was going to take it at 23,” admits Suzanne.”
The Duncans were told that a heart transplant was the only way to cure Andrew of his condition, and so began the waiting game. In the meantime, he was put on medication, and family life changed vastly. As Suzanne recounts, he was still able to do “bits and pieces around the house”, but he felt constantly tired, and doing ordinary things like playing a game of football with his son was not a possibility.
“He behaved like a 50-year-old man,” says Suzanne. “He wasn’t able to work either and was medically retired.
“We found that we were always waiting on ‘the’ phone call from the hospital in Newcastle to say there was a suitable organ donor.”
And finally, on Easter Sunday of 2012, that all important call came. Following a long journey to England, however, it then transpired that the organ wasn’t suitable after all.
Staff told the Duncans that Andrew needed to have a Left Ventricular Assist Device fitted to help pump blood around his body urgently, or he could die.
“On July 24 he had this fitted,” says Suzanne. “But he never really improved after that. He took kidney failure and he had a brain haemorrhage in December 2012. He took a stroke and contracted pneumonia in September of this year.”
In spite of his ill health, she says that her brave husband remained positive, and refused to allow his family to be anything other than this as well.
“He never, never gave up, he was always fighting. He never allowed us as a family to give up hope. I would always have been the negative one, and would have said, ‘Andrew, how do you do this every day?’ and he said, ‘I do it for you and the wee ones, and I do it for all the people in the same position.’”
Sadly, this spirited young man lost his battle with his illness on November 16 this year, and he passed away with his wife beside him.
Dealing with his death is something Suzanne admits has left her devastated, and “very, very lonely”, considering she had been his full time carer for so long.
“He’s at peace now,” she adds. “It wasn’t that he was in pain, but even for him to sit up or get dressed for a day took so much out of him, he was just so frail and if you watch his video on YouTube you’ll not think he was 38 years of age. The disease just took its toll on him.”
Andrew made a poignant video appealing to people to consider donating their organs, and in it he talked candidly about his illness and how it affected him.
Robbie and Aimee also feature in it along with Suzanne, and she says that in spite of what they have gone through in losing their dad, they are being incredibly brave.
“Robbie carried his daddy’s coffin. He’s been amazing. Aimee has taken it hard - she was daddy’s girl,” she adds.
And as Christmas fast approaches, the Duncans are going to try and remain positive and enjoy it as much as they can - not least because they know how much Andrew himself loved this time of year.
“We weren’t going to put the tree up, then we just literally decided to do it, and halfway through we were like - ‘why did we start this?’ But you know what? Andrew loved Christmas, he loved spending it with the wee ones, so you just have to get up and get on with it. The two children are so much like him, too. Their outlook on life - there is so much of their daddy in them. The get up and go.”
It’s clear however, that Robbie and Aimee have also inherited their sense of courage from their mother as well, for Suzanne also shows considerable strength and stoicism in dealing with Andrew’s death.
“You hope that you never have to see the day, but when someone has such a horrible illness, you kind of prepare yourself for this happening, all the while still hoping that it never will - but everybody has to die.
“And the amount of effort it took for him to actually live; there were many days I used to sit up beside him and look at him and think, ‘what is going through your head?’ And many a day he would say to me: ‘I’d love to wake up one day and just be normal’, and then he would say, ‘actually, I don’t know what normal is, I’ve been sick for 15 years.’”
And she adds: “You have to get up and get on with it, and I have to show my children how to do that, because all Andrew wanted was the best for our two children.”
In a further tragic twist, both Robbie and Aimee are also carriers of the defective gene which caused both their father and grandfather to lose their lives.
Their health is closely monitored by doctors, but as Suzanne says, unless they detect the enlarging of their hearts, there is not much they can really do.
“The only thing they can really do is try to maintain a healthy lifestyle; not smoke or drink, exercise, all the usual stuff people with heart complaints should do.
“But I don’t know if it will make any difference. At the end of the day if you have the gene, you will develop heart disease. But hopefully in 10 or 15 years’ time there will be a cure, or an injection, or you will be able to get gene therapy.”
Needless to say, Suzanne is fully behind a new organ donation campaign which has been launched this year, aimed at encouraging people to speak openly with their loved ones about whether they want their organs donated when they die.
“Sit down and talk,” she says simply. “Because if you want to donate your organs, they need to know and it’s an easy enough conversation to have. You need to tell somebody.”
l Watch Andrew’s video clip at www.newsletter.co.uk