Long Qt: My Journey

 

I was going to write this next month, but decided to do this now instead for the A to Z Challenge.

 

L is for Long Qt Syndrome, a heart condition I have.  I'm going to give the short version of how I got diagnosed, so here goes. An explanation of what long qt is will follow.

     Most of my life, I have relatively been healthy. That would change one day back in March 1999. I was 11 and in 6th grade when I suddenly had a seizure in school. After being taken to the ER and spending several hours there, I was discharged with no real reason on why it happened and with follow up appointments. We were told I had an innocent heart murmur, which was completely normal for children to have and usually it disappears on its own. Anyway, for the next couple of weeks after that, I went through a battery of tests and also turned 12. After all of that, doctors still could not find a reason for my seizure - I had followed up with both cardiology and neurology. Life gradually returned to normal and honestly, at the time, I thought it would be a one time thing and all would be good. And it was good...until July 2000 when I was 13. I had another seizure when I was spending the day down the shore (at the beach) with my family. I was taken to the ER again there and all we were told was to follow up with my doctors back home. Once again, I went though another round of tests and yet again, no answers were found. The breaking point would come several months later when I had my third seizure in February 2001 at 13. That time I was still taken to the ER, but to the local one instead of the local children's one where my doctors were. Following up with my pediatrician, he gave us a second opinion for new doctors at a bigger and better children's hospital. Over the next couple of weeks, I went through another round of tests for both cardiology and neurology again, basically starting from scratch. We were finally getting closer to answers, but the tests were ordered to make sure. In May 2001, my neurologist made me spend the night in the hospital/24 hrs for a video EEG (I forget the exact name of it), a test typically done for epilepsy. This is the part where I'm going to mention that my cardiologist was pretty sure I had long qt back in March and my neurologist was convinced I had epilepsy. All tests for epilepsy were negative, but she told my parents and I that she was going to find a way to get me diagnosed with it some way or another and both of my doctors had an epic battle over those two months. May 15th (if I remember correctly) was the day that it ended and I was officially diagnosed with long qt syndrome when I was 14.

     Long Qt Syndrome is a heart condition similar to an arrhythmia, as it causes really fast heartbeats, but it's also slightly different. It deals with the electrical system of the heart. It takes longer for the heart to recharge after a heartbeat than usual and as a result, blood gets blocked up and can't go anywhere. This can result in the following symptoms: fainting; seizures; and cardiac arrest/death. Unusual chest pain can also be a symptom, but it's not as common. It did happen with me. Long qt syndrome is genetic, but as of right now, I am still the only one to have it in my family (others tested negative), but long qt can also be acquired from certain drugs.

Lifestyle Changes and Where I'm at Today:
     It's been 14 years next month since my diagnosis and 16 years since my symptoms started. I have been successfully treated with beta blockers for half of my life now. I still have to deal with hiccups along the way, but it's under control for right now. Being diagnosed with a heart condition, I was told I could not do any competitive sports and had been put on exercise restrictions. Most of that I can actually do now, except I still have to be careful. Symptoms of long qt can occur during or after exercise, being startled, or intense emotions, among other things. The biggest thing I've had to deal with is not being able to take certain medications. There is a big list of medications that we are not allowed to take because they can worsen symptoms or contradict with the beta blocker. This means not being able to take a majority of cold and allergy/sinus medication and having to tough it out. I couldn't imagine my life without long qt nowadays and it is the best thing that has ever happened to me for certain reasons.

I do plan to eventually write a book about my long qt journey because there's more than meets the eye and more than what I can put here. It is hard to look back on that time, but I've come a long way in this battle over the years.

More information can be found at:
SADS Foundation: www.sads.org - they're an organization that deals with long qt, along with other sudden arrhythmic death syndromes (SADS) and disorders. They are dedicated to research and public advocacy for not so common heart rhythm disorders.

 Happy Reading and Keep on Writing!
♥Meg♥