A cardiac problem that could strike at any time
Louise Hoey and her children tested positive for genetic condition Long QT syndrome
Louise Hoey: “LQTS is a very difficult thing to live with. No one understands what it feels like as you never know when or how it will strike.”
Heart disease and cancer are the two biggest causes of death in Ireland and while most of us are aware of what to do to minimise our risks of getting the latter, many people do not pay much attention to the former unless it starts giving them trouble.
And although men are more at risk of suffering a heart attack or having heart disease, cardiac problems are also very common in women and sometimes the symptoms are different to those normally associated with males.
Throughout February, the Go Red for Women campaign from the Irish Heart Foundation (IHF) aimed to raise awareness and prevent deaths from cardiovascular disease and other lesser known heart conditions, some of which are not apparent until the patient is in grave danger.
Louise Hoey can relate to this, as throughout her life she had no idea there was any issue with her heart and it wasn’t until 2002 that she had the first unusual symptoms which caused slight concern.
“After giving birth to my twin girls [Abby and Taylor] 18 years ago, I had a few fainting episodes, including one where I collapsed just after the phone rang,” says the Dublin woman who is married to Troy and also has a 21-year old son, Leon. “Initially I put it down to exhaustion but on the day of their christening I collapsed in the bathroom and woke up with a huge gash on the back of my head. I had to go to hospital to be stitched up and medics were more concerned about the head wound than the reason why I had fainted.
“But my mam was beginning to get a bit frantic with worry as she didn’t think the fainting episodes were normal so she insisted I went for a private MRI, as she thought I might have a brain tumour. But nothing was picked up and it was suggested that I was just really tired after having the twins - so I got on with life and didn’t think about it for a good few years.”
But in 2010 Louise (40) had an alarming episode and was rushed to hospital where more tests were done, and she was finally diagnosed with a rare condition called Long QT syndrome (LQTS).
“One morning I woke up with Troy blowing into my mouth,” she says. “I couldn’t understand what was going on and he told me that when his alarm went off he was surprised that I hadn’t woken up and then I started making a gurgling sound and behaving like I was having an epileptic seizure.
“He was beginning to panic and then I stopped shaking and my lips and eyelids started to turn blue so that is when he tried blowing air into my mouth. I must have caught one of his breaths because I suddenly woke up and asked him what he was doing – the kids were at the bottom of the bed screaming and I was so dazed and shocked by it all. They had called an ambulance, so I was taken to hospital where after keeping me in and doing a lot of investigation including an EEG, MRI and neurological tests, they decided I had epilepsy.
“But I wouldn’t accept this as I really didn’t think I had that, and I told the doctor as much. He asked if I could think of any other symptoms and I said that I sometimes feel a little dizzy, so he sent me for a Tilt test. But they hadn’t even started it when I began to feel funny and before I knew it there was a team of doctors around me and I was taken back to the ward where they told me that they thought I had sudden adult death syndrome.”
After this shocking diagnosis, the mother of three was kept in hospital for six weeks while she waited for and underwent surgery to get an implantable cardioverter defibrillator (ICD) which monitors heartbeat and picks up irregularities. And when it was discovered that she had LQTS, she was advised to have her children tested for same as it can be a genetic condition.
“After the ICD was fitted, I went home to my family – of course, I was sore and very conscious of a pain in my left arm, but I was so happy to see them,” she says. “I was very concerned about the children and terrified that if they had the same condition as me they could just drop dead so, having seen how long the general waiting list was, I got in touch with the IHF and they put me on to the LQTS support group who advised me to contact CRY [Cardiac Risk in the Young] at Tallaght hospital. I went in to arrange an appointment and was probably a bit frantic as I told them my story, so they made an appointment for me in six weeks, which was much better than the 18 months I had been offered previously. But as soon as I go into my car to leave, my phone rang and one of the doctors who had heard my story said I needed to bring the kids in to be tested straight away.
“Leon showed up as positive for LQTS immediately, but the girls didn’t. I was relieved for them but devastated for Leon who was a really keen sportsperson, he was playing GAA for Dublin under 12 at the time. He was put on beta blockers and told that he had to give up all sport and couldn’t even do things like paintballing. It was an awful time for him.”
While trying to help her son come to terms with his diagnosis, Louise, who works as a special needs assistant, decided to avail of genetic testing for the twins in order to be sure that they didn’t have it also. And sadly, results showed that they were also affected so were immediately put on beta blockers and given the same advice as their brother.
“It was a very tough time for everyone, but kids being kids, they just got on with it,” says the Dublin woman. “In the beginning I tried to keep them wrapped in bubble wrap as I was absolutely terrified but as time went on, we started to breathe a bit easier and hoped for the best.
“Then in 2015, Taylor started collapsing and we were thrown back into chaos and fear. On each occasion she was given the all clear but then one day someone came banging on the door screaming that she had collapsed in the park at the back of the house and I realised that we couldn’t live like this anymore. I took her to hospital and said I wanted her to have an ICD fitted – thankfully, the doctors agreed, and it went well.
“She had a shock from it in November 2016 but bounced back with no problems and went straight back into her life, cheerleading and all – she is an absolute trooper.
“LQTS is a very difficult thing to live with. No one understands what it feels like as you never know when or how it will strike. But you can’t live in fear as it will affect your mental health, so my advice to anyone else who has just been diagnosed is to get support from the IHF and the LQTS support group – don’t try to do it alone as it’s very daunting. Just be aware, get help, talk to people and don’t let it take over your life.”
About Long QT syndrome
– Long QT syndrome is an inherited condition.
– It is a disturbance of the heart’s electrical system which causes heart rhythm problems.
– It is estimated that one person in every 5,000 has LQTS. The condition is generally inherited; however, it can also be caused by certain medications you may be taking for other medical conditions.
– Each child of a person with LQTS has a 50 per cent chance of having the condition.
– LQTS usually affects the potassium channels in your heart muscle cells and this causes a delay in the flow of potassium ions out of your heart muscle cells.
– In a small number of people with LQTS, the sodium channels are affected and too many sodium ions are allowed into the cells. The movement of potassium and sodium is essential for the normal electrical activity responsible for your heartbeat. Which is why LQTS can lead to heart rhythm problems.
Women and heart health
– One in four women in Ireland will die from cardiovascular disease. It is one of the leading causes of death in Ireland.
– Women are almost six times more likely to die from cardiovascular disease than breast cancer.
– Women can experience different symptoms to men and if they have any risk factors it is important that they are checked and treated.
– The symptoms of a heart attack in women can be quite vague, making it hard to diagnose. They can include nausea, tiredness, shortness of breath, back pain or tightness in the jaw rather than the more familiar symptoms of a crushing pain in the chest that shoots down one arm.
– Eighty per cent of premature deaths from cardiovascular disease are preventable.
– Each year, almost 9,000 people in Ireland die from heart disease and stroke.