My Long QT story – by Jodie Pearson, age 36
I was diagnosed with Long QT1 in 2010 when I was 27 years old. A close relative had been having “funny turns” at work with palpitations. Following one of these funny turns my relative went to see our GP, which my relative never does of their own accord. Anyway following the consultation with the GP he referred my relative to Cardiology. My relative actually came home and asked another family member what a Cardiologist was to which made us very worried.
Through my relative seeing a Cardiologist and having a basic ECG it was found that they had a prolonged heart rate which lead to the diagnosis of Long QT. As this is a genetic condition I was asked to have an ECG from which I was also diagnosed with Long QT. Other relatives then had to be tested to see which side of the family it had come down.
As my relative and I were both still under the age of 35 we were started on Beta Blockers, my relative was then sent for another test to find out what stage of Long QT we had (1-4). This test involved 2 Anaesthetists putting their heart under so much pressure to the point where they were at a dangerous risk of having a heart attack. Following this we were diagnosed with Long QT1 and treatment is lifelong medication. Relatives over the age of 35 were not started on any medication as after this age your risk reduces.
3 days after I was diagnosed and started on medication I was flying to Fuerteventura for my honeymoon. I was advised not to go into water alone or do any exercise in the water as sudden shock or adrenaline is what can cause our hearts into arrhythmia.
3 years after being diagnosed my husband and I decided we wanted to start a family. We had a discussion about the fact that there was a 50% chance I could pass the gene onto our child but my husband completely understood and said we would just deal with that if it happened. Unfortunately that did happen and I understood the guilt that my family members feel through passing this on.
While I was pregnant we were given the option of having the blood tested from the umbilical cord or waiting until the baby was slightly older and them having an ECG. We both decided we wanted to know as soon as possible so had the blood tested from the umbilical cord following the delivery. It was only 4 weeks later that I got a call from the Queen Elizabeth Hospital to say that my baby had the gene, I remember holding my baby while I was on the phone and being very calm until the call ended and I just broke down. When my baby was 6 months old they had their first consultation at the Birmingham Children’s Hospital and was started on lifelong medication.
My baby isn’t a baby anymore and is now 7 years old, my child is amazing and takes their medication 3 times a day with no problems whatsoever. My child is fully aware that they have, what they call “a poorly heart” and understands that there are some things they are unable to do like sprinting, being supervised in the swimming pool etc. The school have been amazing, they give the medication, understand all about the condition and even alter physical activity so my child can still participate in sports day, they put my child in the races that do not involve sprinting.
In 2018 I did a fundraiser at work and opened a crowd funding page and raised £1700 to purchase a defibrillator and case for the school, which is up on the wall of the school and is available for the community to use as well. This just gave us as parents a bit of reassurance while my child was at school.
Myself, and 2 of my close relatives also participated in the Heart of London Bridges Walk in June 2019 which was a very emotional experience as we were the only ones there who were not walking in memory of someone but we’re lucky enough to have been diagnosed and be able to continue to live a normal life, we also managed to raise over £300 between the 3 of us.
So that is my story so far, I never really thought much about having a heart condition until I had my baby and they are the reason why I get more involved with raising awareness, raising the money for the defibrillator and when my child is older I would like us to do the Heart of London Bridge Walk together.