Friday 18 August 2017

'It's sad because I was still alive but someone had died' - Ciara (26) on how her new heart has transformed her life

Last year, Ciara Craig received a heart transplant. She tells our reporter how much that gift means and of her plans for the future

Heart transplant survivor Ciara Craig on Howth Summit.
Photo: Tony Gavin 12/7/2017
Heart transplant survivor Ciara Craig on Howth Summit. Photo: Tony Gavin 12/7/2017

Kathy Donaghy

When Ciara Craig (26) looks back on last summer, it's not full of picture-postcard memories of the typical twenty-something. Her room in the Mater Hospital had become a place where time was suspended as she waited for news that she was getting a new heart.

Her road to a heart transplant had taken more than 25 years but it had become inevitable in the end as her health deteriorated and doctors pronounced it was the only option.

Looking back on that time, Ciara is not altogether sure how she waited and bore the disappointments of being ready for surgery only to find out the replacement hearts were not suitable.

But she is sure of one thing; that she will do everything she can to be as healthy as she can be and make sure that her life is full of the wonderful, ordinary things that we often take for granted. Things like buying a house, taking an exercise class and driving her car listening to her music: these things she is determined to enjoy to her heart's content.

Growing up in Cheshire in the UK before moving to Dublin's Donaghmede at the age of 11, Ciara was always aware of her heart problems. Her mum Linda knew that something was wrong when Ciara wasn't feeding well at eight-weeks-old. She appeared to be starving but would be too tired to feed when her bottle was given and would quickly fall asleep.

After her mother persisted when doctors told her nothing was wrong, a hole in the heart was eventually diagnosed. Doctors said it would close on its own. However on further examination cardiomyopathy, a disease of the heart muscle, was diagnosed. Ciara says it meant her heart was weakening from birth and she was prescribed drugs to deal with it.

Heart transplant recipient Ciara Craig on Howth Summit. Photo: Tony Gavin
Heart transplant recipient Ciara Craig on Howth Summit. Photo: Tony Gavin

She describes her childhood as active with restrictions around sports. She took dance classes and competed in dance shows and competitions. She never really felt her heart condition held her back. It wasn't until her teenage years that she became aware of being more responsible for minding herself. She was told she had to limit alcohol if she was going out.

Completing her Leaving Cert at Manor House in Raheny, Ciara went to Coláiste Dhúlaigh where she did a Post-Leaving Cert course before going on to take a four-year degree in clinical measurement at Dublin Institute of Technology on Kevin Street. Ironically, Ciara chose to specialise in cardiology.

Throughout the period Ciara was having routine six-monthly visits with her cardiologist at the Mater Hospital. On one of those visits six years ago, at just 20-years-old, her cardiologist told her that her heart function had deteriorated.

"I was feeling fine. If I had been sick I would have understood but I didn't notice a difference in myself," she says of the time. As a result she had an internal defibrillator fitted, something she felt comfortable about as it was "like a back-up", she says.

College life was busy but passed uneventfully enough. Ciara was delighted to find a full-time job as a cardiac physiologist with Our Lady's Children's Hospital in Crumlin but, in October 2014, one year into her job, she began feeling dizzy and tired.

She put it down to being extra busy and she had been doing quite a bit of exercise at the time. She was finding it difficult to breathe but thought it was a bad cough. Her GP sent her for an X-ray and when she saw her consultant that same day, he mentioned that it may be time for a transplant.

Ciara will never forget that day, October 14, 2014. The visit to the consultant was routine but Ciara was floored by the suggestion that it might be time to think about a transplant.

"My mum was texting me to see how my appointment went. She wanted to come with me that day but I said 'I'm grand'. I didn't want to tell her over the phone what had happened but the minute I got in the door I just burst into tears," says Ciara.

It was perhaps the news her mum Linda had been dreading ever since Ciara was a baby. A doctor had said it was a possibility when she was little.

Ciara couldn't take in the news. "I was feeling OK because I'd started new drugs. I was exercising. I really felt I didn't need a transplant," she says. At the same time she began undergoing tests and assessments to see if she was suitable for a transplant.

She continued coping well on the drugs although she began to feel sick. A Caribbean cruise was planned and Ciara went on what she hoped would be the holiday of a lifetime with her boyfriend Karl. "I thought, I'm going to enjoy this because I didn't know when my next holiday will be," she says.

However it didn't go to plan and Ciara couldn't eat properly, could only walk for a little bit before she had to stop and began to experience swelling in her ankles. Even though some parts of the experience were wonderful, she came home feeling exhausted.

A barrage of test results showed her heart was weakening further and in June last year Ciara was officially put on notice for a heart transplant. Her medication was increased to give her heart a break and from there it was a waiting game.

"I think what kept me going is that I was positive the whole time. I kept saying 'I'm going to be OK'. I never lost hope. Obviously I had down moments because I was in hospital and you're in a room and the weeks went on and on," she says.

A few weeks into her eight-week hospital stay last summer, a nurse came in to say that there may be a heart for her. "I was in my room doing a puzzle at the time and the nurse came in and looked at my name band. I hadn't a clue what was coming and I just burst into tears," says Ciara.

After phoning loved ones including her mum, Ciara signed consent forms and had numerous visits from doctors and anaesthetists. Blood tests were done. Hours passed as she readied herself for theatre before she was told it wasn't going ahead.

She went through the whole process a second time. Again the heart wasn't suitable. And all the time her condition was deteriorating.

Shortly afterwards the call came again that there might be a heart for her. "I had a feeling this time that it was different. I knew it was going to work. My mum had the same feeling - she said it felt really strange. They say the first call you get doesn't happen. The nurses had tried to prepare me, telling me that until I woke up with a scar on my chest that I didn't have my heart," she says.

And last August, Ciara got her new heart. She recalls being full of mixed emotions when she finally came round from her ordeal. "It was overwhelming. I was so happy. But I was sad too. Someone had died but I was still alive. I remember saying to my boyfriend Karl in ICU that we were happy but another family wasn't celebrating. I was happy and sad but I had to focus on getting through it all," she says.

After two weeks and five days in hospital, Ciara finally got back home. She describes the feeling of being in her own home again as "amazing". "I just wrapped myself up in a blanket on the couch and my mum made dinner. I hadn't been in my own bed in so long - it was just great," she says.

Her recovery could not have gone better and doctors are delighted with her progress. She went back to her job as a cardiac physiologist at Our Lady's Children's Hospital in Crumlin at the end of March this year and is taking it slowly, doing a few hours every day and building herself back up again.

"Some days I'm tired. Some days I'm OK. Exercise is a big part of the recovery. I did a cardiac rehabilitation programme in the hospital. I have an exercise bike at home and some days I go out for a walk. I might walk 5k or I might walk 8k. I would do that at least five days a week," says Ciara.

She knows the risk of rejection is life-long but if she follows the protocols and takes the medication, she can minimise that risk.

And she is determined not to let her past dictate her future. "I want to live my life like everyone else. I want to buy a house - I couldn't possibly have thought about that before. I'd like to have kids. There's Transplant Olympics - I'd love to take part next year. I want to think about what sport I'd like to pick for those, maybe swimming or tennis. I want to go back dancing and I want to get up to a good level of fitness," says Ciara.

She believes a positive attitude helped her cope when things felt like they would never get better and her health was worsening. "I honestly didn't let negativity get in the way. It doesn't help thinking 'poor me' or being angry about it."

Ciara knows nothing about her donor. "I know you can write a letter or a card and you can give it to the counselling team. If the donor's family want to get back in touch with you, they can. It is something I want to do. I will do it when it's the right time," she says.

"Organ donation doesn't just save a life. It saves a family and creates life for generations to come. I'd say to people have the chat with your family and let them know your wishes, especially your next of kin. Just give it some thought," says Ciara.

* For more information on organ donation see the website of Organ Donation and Transplant Ireland at Organ donor cards are available at most pharmacies. They can also be obtained through the Irish Kidney Association on LoCall 1890 543 639 or or freetext DONOR to 50050

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