Ahead of Valentine’s Day this Friday, two Northern Ireland families explain why the work of the British Heart Foundation is vitally important to them
Chloe Fisher (20) is from Kilkeel, Co Down, and is studying speech and language therapy at Ulster University. Her mum and dad are Brenda and John. She has a brother Johnny (16) and a sister, Natalie (21). She says:
My parents had no idea about my heart condition before I was born - I'd been breathing through my mum and once I was breathing on my own, they realised I was struggling.
A midwife noticed there was something wrong, I think it was my colour and my breathing, and as soon as the alarm was raised, I was taken straight from Daisy Hill Hospital in Newry to the Royal in Belfast by blue light ambulance.
Mum was allowed in the ambulance with me and I know that they warned her that they didn't even think I was going to make it to Belfast.
I was diagnosed with Tetralogy of Fallot, which basically means I had a number of different things wrong with my heart and I needed surgery to repair them. I think I had two open heart surgeries before I was 15 months old.
I always knew that I would need further surgery because I had a leaky valve in my heart and I knew that would need to be fixed but I don't really think I understood what it meant.
They said it hopefully wouldn't become a problem until I was about 16 and they kept an eye on me over the years.
I just thought of the trips to the hospital as a good day off school, I didn't realise it would have such an impact on my life. It wasn't until I started to get sick that I really realised what it all meant.
I was about 15 when I started to notice that I was having problems. I went into the Royal and had a catheterisation procedure and they discovered that the leak in my heart was quite significant and decided I would need the operation.
I was put on the waiting list and things got gradually worse and worse as time went on. I was getting really, really tired very easily and it got to the stage where I couldn't get through a whole day at school.
Even walking to the next class completely exhausted me, talking to people would have been exhausting, little things like having a shower and washing my hair were too much. I really felt like I was missing out on so much because my friends would be going out after school and all I could do was stay at home.
I even started passing out; the first time it happened I was at Girls' Brigade in front of all of my friends, which was really embarrassing. It was just after the catheterisation and I hoped I was just weak from that, but then it kept happening.
I was in hospital having a routine appointment and they did a scan on me and said that maybe I should stay in hospital. They basically said that by being in hospital I would get the operation quicker, they were very casual about it all, which was really good as it didn't freak me out.
I was only 17 at the time and they really didn't want to scare me, but I now know they were really worried about me.
Even so, I think I was starting to panic about my health a bit by this stage because I was beginning to realise how serious it was. I think for a long time I was walking on eggshells.
Once I was in the hospital waiting for the operation, I remember the surgeon coming to see me. He was talking me through what was going to happen and he asked me if I had any more questions.
I asked if I was going to be okay, I wanted him to say that I would, but he didn't.
They said to my parents that they were really worried about how the surgery was going to go, they were really worried I wasn't going to make it through the surgery.
They kept telling me that I could go out shopping or go for lunch with my friends, I think because they knew how things might turn out and they wanted me to enjoy the time I had. My heart had really expanded by this stage and I was in a really critical condition.
The day before the operation, I went out for dinner with my family and I actually wrote a letter saying goodbye to my family and slipped it into my mum's bag but didn't tell her about it until I was going into theatre.
I knew I wouldn't have had the strength to say to them what I wanted to say in those moments and I wanted to make sure that I was able to tell them everything I wanted.
By the time the operation came around, they told me they were really going to try and do everything they could but they also wanted to prepare me for the worst.
They gave me sedatives to help me sleep that night, but they didn't work - it was really strange, I had excitement flutters but I was really nervous as well.
I basically stayed up all night texting friends and the whole time I kept thinking that this might be the last conversation I ever have with them. I did say to a couple of friends that I really appreciated them being there for me but I didn't really let on how worried I was.
I said goodbye to my brother the night before, he was only 14 at the time, and the following morning my mum, dad and sister were there. I remember they gave me more sedatives and told me I wouldn't remember a thing, but I remember it all so clearly. I remember being wheeled down to theatre and it was so emotional.
I said goodbye to my dad and sister in the lift, I remember giving them a hug and one hug just not being enough, I remember the feeling of them letting go. Mum went with me to theatre, my dad just couldn't do it but watching my mum just before the operation was probably the worst part.
The surgery lasted around nine hours and when I came around I thought it hadn't happened, and when I realised it had and I'd survived it, I can't describe the feeling.
I recovered really well, I met all my milestones quicker than they expected and I couldn't believe how quickly I progressed. I actually got home a week after the operation.
It was maybe a couple of months later that I started to notice the progress levelling off and things gradually started to get hard again.
I do need more surgery, but it should be keyhole this time, so hopefully it won't be as tough. I'm not sure when they're going to do it.
It's something they're always going to have to keep an eye on and there are only so many times you can have keyhole surgery, but they have said they hope that by the time I would need open heart surgery, there will be other options.
That's why research is so important and why I support the British Heart Foundation. It saves lives, it's the only reason I'm alive today."
Tetralogy of Fallot is a group of four structural abnormalities within the heart that occur together.
It is treated by surgery, which can happen soon after birth if a baby has severe symptoms.
During the operation, the surgeon will close the hole in the heart and open up the narrowing in the pulmonary valve. Some patients develop leaking of the pulmonary valve after treatment of Tetralogy of Fallot.
This requires ongoing monitoring and if the leak starts to cause a problem with the heart then the valve will need to be replaced.
Mental health support worker Suzanne Duncan (46), who lives in Londonderry and is mum to Aimee (20) and 18-year-old Robbie, lost her husband Andrew to dilated cardiomyopathy. She says:
Andrew was diagnosed with Crohn’s disease and had a bowel operation in 1999 but didn’t really seem to recover from it. He would be sitting in a T-shirt and you could see his heart pounding out of his chest. He went to the doctor and he did an ECG and sent him by ambulance to hospital.
Andrew was there for two weeks and they diagnosed him with dilated cardiomyopathy.
His dad had died when he was 40 with the same condition and Andrew was just six at the time. It’s a genetic condition but in those days, when Andrew’s daddy died, they didn’t test for it.
He was put on medication to keep it under control, but he was back in the hospital two months later because his heart was failing.
It was scary at the time because Aimee was only eight months old, but they upped his medication and that improved things and we had Robbie two years later.
Our lives were fairly normal, well as much as they could be. Robbie never played football with his daddy. He was still there for the kids, but he was never able to kick a football round with Robbie or push the kids on the swing, he couldn’t take part in the parents’ race at school sports days and he found all that difficult.
It was debilitating for him, he was a 23-year-old man but he seemed more like a 50 or 60-year-old. He was always very positive though and would keep saying that everything was going to be okay.
Every step of the way, however, we told the kids what was happening in their own terms. They came to see him in hospital when he wasn’t well and I really believe that if you aren’t honest with children, it’s actually worse for them.
Andrew was tested for the transplant list in 2000 but he wasn’t sick enough. The medication actually worked well for about eight or nine years but then Andrew became very sick.
At Easter time in 2012, we got a phone call in the middle of the night telling us that a heart had become available. It was so surreal, I actually cried for the person who had died but I looked at Andrew and he was so, so sick.
We got the call at 12.45am and by 3.30am we were sitting in Freeman Hospital in Newcastle-Upon-Tyne in England. I was actually up in the attic getting a suitcase down at 1am and we got a taxi to the airport.
Unfortunately the heart he was supposed to get was defective so the transplant never happened and we went back home again. He started getting sicker and we went back to the Freeman so they could keep an eye on Andrew while he waited for his transplant.
He went on the emergency transplant list that July which meant he could get a heart from anywhere in Europe. He was on that for two weeks and they came to us one night and told him he couldn’t wait any longer.
They said they could either let him die or put in a device in his left ventricle which would pump the blood around his body and that’s what he went for.
The recovery from that was difficult because he was on warfarin (blood thinner) and with the Crohn’s there was a lot of bleeding.
He eventually got home but then on Boxing Day morning in 2012, he had a massive brain haemorrhage. We were in the living room and I thought he was messing around and was scolding him because he was pulling faces and then I noticed the blood coming out of his mouth. He ended up back at the Freeman and he was still totally out of it.
The doctors came to me on the Friday and said they would be very surprised if Andrew was still there on Monday. By the time they came back into work on the Monday, Andrew was sitting up in bed.
He’d lost his swallow and he had to learn to walk again, but he was so determined, 100% he was a fighter, 100% he thought he would get his transplant.
At that time he was taken off the transplant list, but he managed to get back onto it at the end of 2013.
All the time, he was convinced he would get his transplant, although it upset him that someone would have to die for him to live. But then he took a massive stroke in September 2014, two days after his 38th birthday, and it turned out he had pneumonia and sepsis. I couldn’t understand how that was the case because he had been for dialysis a few days before.
By this stage, his kidneys were also failing and he needed a kidney transplant but that couldn’t happen until he got his new heart.
He eventually got home but he wasn’t great, he was still in the wheelchair, but the fighting spirit was still there. He would sleep round the clock, his body was exhausted and then he died in November.
He wasn’t feeling well the day before, he wanted to sit in the chair and then lie on the sofa, then he wanted back in his wheelchair. Then he asked to go to bed so I put him up to bed and he asked me to switch on his oxygen. I was going to do his tube feed but he said he was going to eat the next day.
I left his oxygen on during the night because I knew he would struggle without it. I checked him at midnight, at 3am, 5am and he was still sleeping soundly, but then the alarm started sounding at 8.20am and he was gone, that was it.
When it happened, it was a relief — not a relief that I’d lost him but that he wasn’t in pain anymore. I was still devastated, I’d looked after him for 14 years and he was gone, the kids were devastated.
I got a job six weeks later, there is only so much cleaning you can do and I just couldn’t be in the house any more.
Aimee is doing veterinarian medicine in Nottingham now and Robbie is hoping to go to Queen’s to study computing. They’re doing well but it’s still very hard for them because they both have the same gene as Andrew and they could develop dilated cardiomyopathy. That’s a lot for them to deal with. Andrew fell ill when he was 23 and Aimee is 21 in May.
British Heart Foundation has been amazing through all of this, I don’t know where we would be without them.
Everyone at the charity is just so kind, they were so fantastic after Andrew died and fundraising for the charity gave him a purpose as well. The research it does is amazing too and I hope they will help my children if they need it in the future.”
Dilated cardiomyopathy (DCM) is a disease of the heart muscle where it becomes stretched and thin, meaning it is unable to pump blood around the body efficiently.
Inherited DCM is caused by a change or mutation in one or more genes.
If you have DCM, there is a 50% chance that your child will inherit the condition.
The British Heart Foundation (BHF) estimates that around 17,500 people in Northern Ireland are currently living with a faulty gene that puts them at high risk of a heart attack at a young age, or sudden death.
Chloe and Suzanne are speaking out about their experiences as they pledge their support to the British Heart Foundation (BHF) to coincide with National Heart Month.
One in four of people in Northern Ireland die from heart and circulatory diseases, which is why BHF funds world-leading research into causes, prevention, treatment and cure.
The charity is also campaigning alongside Suzanne’s family for soft opt-out donor legislation in Northern Ireland to increase the number of people who get a life-saving transplant. Around 14 people here die every year waiting for an organ transplant.
The charity also hosts its Heart Hero Awards, which celebrates individuals who support the organisation, and it is asking for nominations before February 29.
For more information about the charity or to nominate someone for the Heart Hero Awards, log on to www.bhf.org.uk.
To sign up to the NHS Organ Donor Register, log on to www.organdonation.nhs.uk or ring 0300 123 23 23.