While many people have thought about organ donation and may even want to be a donor, if they do not talk about this to their next of kin, their wishes may never be carried out.
Karen McDermott is a prime example of this.
"I had the organ donation card in my wallet, but I had never discussed it with my family so they didn't know that in the event of something happening to me, I would want to donate my organs. And look what happened - I was the person who ended up needing a heart!"
Last August, Ms McDermott, a 38-year-old mother of two from Clonakilty in Cork, underwent a five-and-a-half hour heart transplant operation in the Mater Hospital in Dublin.
For the last few years, she had been experiencing symptoms such as heart palpitations and sweating. Then in 2011, she developed a bad chesty cough and noticed that at night, it would cause her to wake from her sleep feeling almost breathless.
"But I was a busy, working single mother of two and I felt like I just had to get on with it so I never sought medical help. I looked up Google and some of the symptoms pointed to panic attacks. I would never advise someone to self-diagnose themselves using the internet after my experience," she said.
However, in October 2011, she finally went to her GP when she could not eat. She felt very bloated and uncomfortable and one day she would gain weight, while the next she would lose it.
"My clothes would fit me one day and not the next. I was treated for acid reflux, as a lot of the symptoms are similar. I went back to the GP a few weeks later and they noticed that when I lay down to be examined, I turned blue," she noted.
A chest x-ray was suggested.
"That Christmas - December 2011 - was shocking. I had no energy, I couldn't go up the stairs without getting out of breath and I was coughing up phlegm, but I thought it was the meds for the acid reflux causing it all.
"My family came to me for New Year's Eve and I ended up falling asleep on the sofa. At this point, my mother said ‘there is definitely something wrong', as I'd usually be quite energetic," she explained.
She said she went to her GP on January 2, 2012, ‘waving a white flag and asking for help'.
A chest x-ray was immediately ordered and this took place in Bantry General Hospital on January 6. She was told to return to the hospital on Friday the 13th of January for her results. At this point, she thought she might have irritable bowel syndrome.
When she attended Bantry General on that fateful day however, the diagnosis was far more serious. She was told the mitral valve in her heart was not working so blood was not being pumped properly around her body. The doctor rang consultant cardiologist, Dr Eugene McFadden, in Cork University Hospital (CUH), who wanted to see her straight away.
"So I was brought in an ambulance to CUH. It had not hit me yet and I actually walked into the hospital saying ‘I don't know why I'm here'. The staff were stunned that I could walk because usually patients like me are brought in a wheelchair. I kept wondering why I had to stay," she said.
Dr McFadden started asking Ms McDermott lots of questions about her day-to-day life and possible struggles that she might have, for example losing her breath after certain activities.
"But anything he asked me, I just said ‘yes, I can do this, I can do that'. Eventually, he told me that he was going to leave me for a few days to think about all of the questions he had been asking me and to think carefully about the answers. Over the next few days, I thought about everything and realised I had been struggling for a long time with many things," she explained.
The following Tuesday, Dr McFadden returned and the reality of the situation was spelled out. Ms McDermott had a combination of mitral valve disease and dilated cardiomyopathy and she was in end-stage heart failure. Her heart was working at just 16% capacity. She was told there were three main options. The first was surgery to repair the mitral valve. However, her heart was so weak at this point, there was a strong chance she would not survive the operation.
The second option was that she would return home with medication aimed at improving her heart muscle, making it strong enough to undergo an operation to repair the mitral valve.
"The doctor then said, ‘I'm going to say something to you that may be mentioned to you again, but I want you to be aware of it'. He then said the third option was a heart transplant. My reaction was ‘what!' He then said he was going to send me to the Mater hospital in Dublin."
Over the next few weeks, it became apparent that a heart transplant was the only real option for Ms McDermott. She was fitted with a defibrillator to help her heart's functioning and then in May, was fitted with a pacemaker. However, her health deteriorated after this as a her heart rejected the pacemaker.
By June, she was very weak. Walking and talking at the same time became ‘impossible' and she was experiencing a bad rhythm in her heart all the time. On June 29, she was placed on the transplant list for a new heart.
She emphasised that she would not have been able to get through this period if it were not for her family, who she described as ‘absolutely fantastic'.
"When this happened, we were living in a rural location and because of my health, I could no longer drive. So my sister took us in for six months and then I moved to the town and members of my family moved in with me to help,"
She said that she was open with her children about her health, but while she explained all about the transplant to her 14-year-old son, she did not go into great detail with her 10-year-old daughter, as she wanted her ‘to keep some of her innocence'.
One day in August, she received a phone call from one of the transplant co-ordinators at the Mater Hospital to say a potential heart was available and an ambulance would be coming to pick her up. She then travelled by ambulance from Clonakilty to the Mater Hospital and was prepped for surgery.
However, when the surgery team checked the heart, they found it to be bruised and it could not be used.
"I was numb. I just wanted to go home and I didn't speak the whole way back to Cork and I am normally a chatterbox. I went though a hundred emotions - sadness, disappointment, cross, upset. I was also so sad for the donor family because they had made this major decision and it hadn't worked out. There were tears, but I woke up the next morning and decided to just get on with it," she said.
Just one week later, she received a second call to say another potential heart was available and was back in the ambulance to Dublin. She said during this trip, she had a strong feeling that the operation would go ahead this time, a feeling she hadn't had the week previous.
The operation took five-and-a-half hours and when she woke up, one of the first things she realised was that she felt warm.
"Because of my condition, I was always cold so I remember feeling very warm and thinking this was great. I could literally feel my heart pumping blood. It was an immediate effect,"
Ms McDermott was in intensive care and was then moved to a high dependency unit, before being moved to a ward. Because she had a ‘great recovery', she was able to see her children the following week.
"They didn't know how to react, but they just couldn't believe that there I was, sitting up in bed. It was incredibly emotional," she said.
Ms McDermott is on a lot of medication, some of which will be lifelong. While the effects of some of these drugs are difficult to get used to, such as steroid-related weight gain, she said there is no comparison with end-stage heart failure.
"It is so amazing just to be able to walk without getting breathless."
While she had to stop working in her local credit union, she is hoping to return to work eventually, although doctors advise that people do not work for one year after a heart transplant.
Ms McDermott knows absolutely nothing about the person who donated her heart, not even the gender, although she does refer to her as ‘she'. However, she said she thinks about ‘her' every day, sometimes multiple times a day.
She said if the opportunity arises, she would love to meet the family of the donor.
"I'd love them to see I'm just an ordinary person with two children, who will now get to see them grow up. I would hope that they would get comfort from the fact that they have given me my life back because of the decision they made," she explained.
Ms McDermott now happily admits that she is ‘obsessed with organ donation'.
"It's all over my Facebook page and I'm always hounding people about it. The people of Clonakilty have been a fantastic support to me I often get people saying to me, ‘I never thought about it, do you have a spare (organ donor) card?'. The thing to remember is it can happen to anyone."
For more information about becoming an organ donor, click here
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