Information & Advice For Arrhythmia Patients

Maias Story

Hello, my name is Maia, I’m 11 years old, and I want to tell you about my heart condition.

When I was just six years old, I fainted in a swimming pool. I was extremely lucky that my mother saw me, and the caring lifeguard helped me to regain consciousness. The first doctors we saw could not tell what had caused the faint, despite running many tests such as resting ECG and brain scan. Even the cardiologist was confused. But we knew there was a reason for my faint, and we were determined to find out what it was. My paediatrician referred us to a paediatric electrophysiologist (that’s a cardiologist who understands heart rhythm disorders) in London. Following a short treadmill test, it was later confirmed by DNA analysis that I have a genetic heart condition called CPVT (Catecholaminergic polymorphic ventricular tachycardia).

Having CPVT means that during intense exercise, my heart starts to have extra beats which, when they become too frequent, can cause fainting, or even cardiac arrest. When you hear of young people suddenly dying, it could be caused by a heart condition such as this. This condition is genetic, and my brother Mateo has it too. It was passed on by my mother, but luckily, she does not show any symptoms. CPVT is rare. It only affects one in 20,000. But there are other arrhythmias which are more common.

The period around diagnosis was very difficult for our family, we were scared, concerned and worried about the future. Thankfully, the hospital were very helpful, even providing psychological support. Likewise, our school is also supportive. They put defibrillators in the front offices, and the teachers look out for us during sports, making sure we take it easy and not push ourselves too hard. On school trips, our teachers remind us to take our pills and carry the defibrillator around. When I first found out I have CPVT, and that I could not participate in sports at first, I was sad and angry as I love sport! Then I accepted the seriousness, and realised it was better that we got the diagnosis now rather than later.

Despite early frustration, I bring good news. Five years later, I have not had another episode. I am checked twice a year in hospital. I do exercise stress tests, which is running at different speeds and slopes while spaghetti wires as we like to call them, transmit our heart rates to the monitors. After each test, we meet the doctor to discuss the results. We still see the same electrophysiologist who diagnosed us. She makes it very easy to understand.

I take two pills, nadolol and flecainide twice a day, in the morning and the evening. They slow my heart rate to reduce the risk of extra beats, and luckily, I have no side effects. I play sports inside and outside of school, including football, netball and tennis. The only extra precaution we take is to ensure that there is a defibrillator within reach.

So, does taking medication and having a heart condition affect how I travel? No way! I still love to go on school trips such as sailing and skiing, and I go to amazing places with my family such as America, Argentina and France. Thankfully I’m able to live a pretty normal life and spend very little time thinking about CPVT.

Some advice to you:

  • If you have fainted before, don’t panic! It does not necessarily mean that you have a serious heart condition. But if you fainted while exercising, or at a time you were excited, you should speak with your doctor and get it investigated. It might mean doing a treadmill test for around ten minutes.
  • Learning CPR is easy and can save lives. There are a number of organisations which train for free.  
  • Urge your school, club or workplace to get a defibrillator. They are easy to use, and could make a big difference. For each minute defibrillation is delayed, the chance of survival is reduced by ten percent. Considering that NHS England requires all ambulances to respond to category one calls in an average time of eight minutes, a person’s likelihood of survival is reduced to twenty percent once an ambulance arrives. Having your own defibrillator and CPR-trained staff dramatically raises the survival rate. Defibrillators require absolutely no training. They talk the user through what to do in an emergency, and will detect a heartbeat, so if it is not needed, it will not shock the patient. Arrhythmia Alliance can provide support to help place a defibrillator through their Defibs Save Lives Program, so do get in touch if you’re thinking of placing one near you. www.defibssavelives.org


Get in touch for more help and information

+44 (0) 1789 867 501info@heartrhythmalliance.org

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