Tuesday, April 14, 2015

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♥
 


12 comments:

  1. Thanks for sharing this information. My husband was just diagnosed with arrythmia a few months ago and we've been learning as we go about what it means to live with it.
    And thank God for the right diagnosis!

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    1. Thanks Tyrean. Looking back on it, I think this was a blessing. I'm thankful every day that I got diagnosed see when I did and it could have been worse.

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  2. you should write a book - its where many people learn they have a similar problem as doctors often dont know

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    1. Thank you for coming by and commenting. I've tried multiple times to start writing a book on this, but it brings back a lot of emotions for me as it always will. I'm determined to get it done soon. A lot of people, including doctors, don't know what long qt is to this day, making it more important to getting the word out.

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  3. ((HUGS)) I am so sorry you had to jump through these hoops before the doctors got it right. My heart goes out to your parents as well. I have a 9 and 12 year old (some older and younger, too!) I love my kids with all of my heart and I can only think of how long the nights were for you guys.

    Thank you for enlightening us, I shared this post. <3

    Elizabeth Mueller
    AtoZ 2015
    My Little Pony

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    1. Thanks Elizabeth! In the end, it doesn't matter how long it took to get answers - at least I got answers at some point. It definitely was harder on my mom (I'm the youngest) than my dad, but I also have an older brother and it was hard for him at times too just to see me go through everything. Thanks for sharing it - means a lot to me. ~ Meg

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  4. Hi Megan - so interesting to read about this condition and eventually how they worked out what you had - it must have been very frightening all round ... but at least now you know and can adjust your life accordingly. I'm sure it's difficult at times and obviously from your comment above was then ...

    All the very best for now .. and you do need to write that book ... why don't you write it in blog form (once the A-Z is over) ... then it doesn't have to be exact, but can be your prompt notes as you actually get to write the book, with the chapters etc ... and if you want to add things in .. you can without having to readjust the book per se ... just add another post and later on .. it'll clarify itself .. and write itself probably too ...

    Cheers Hilary

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    1. Thanks Hilary for stopping by again. It was definitely harder back then and not getting a diagnosis for two years was tough. I ended up suffering from anxiety/panic attacks for several years, but it's so much easier now. I refer to it as being like a roller coaster.

      I haven't figured out how I'm going to write the book yet (like how I want the chapters to go or the order of it), but I like your suggestion - it's something to think about. Thanks. ~Meg

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  5. Hi Megan; at 13 I started blacking out myself. Fast forward to the age of 45 in 2012 I had three sudden cardiac arrests later to be diagnosed with long qt.

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    1. Hi Oscar. Thanks for commenting. ~Meg

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  6. I had been misdiagnosed most of my life. At age 12 my daughter was diagnosed. She is on betas and carries an AED. Any words of wisdom for her with this challenging condition? We are long qt type 5, a rarer kind.

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    1. The best advice I could give would to not let long qt control your life. I don't know if your daughter had symptoms, but because I did, I let the lqts take over my life for several years, which only made me have anxiety attacks and scared to do anything. As long as we have the right treatment, we can live a normal life. And secondly, know your limits and don't let anyone else (without lqts) tell you differently. I believe type 5 triggers are the same as type 1, which is sports/exercise. I'm willing to talk with you more, Oscar about long qt through email/privately if you would like. Thanks for sharing your story and your daughter's. ~Meg

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