Wednesday, July 21, 2010

everything you ever wanted to know about my heart

Well, tomorrow brings the long awaited (and truthfully- dreaded) day.
I'm really incredibly thankful for this little device I have implanted inside of me, thankful for a doctor who was proactive, thankful for modern medicine and the amazing technology available to keep people like me kickin'.
For those of you who don't know (or maybe you do, but don't know exactly why or what..), I have a condition called Long QT Syndrome.
Actually, let me back up a little first.
When I was 13, I started randomly passing out. For some (very odd) reason, I thought it was normal and never told anyone. Then, when I was 16, my alarm went off one morning, I got out of bed and hit sleep, laid back down and had one of the scariest moments of my own life. My heart was beating so quickly and hard that I literally thought it was exploding. I tried yelling for my mom, but could make no noise. I tried hitting my arms on the wall, but couldn't move. I eventually passed out, and awoke frightened and covered in urine. I went downstairs to tell mom about it (and thought the urine was sweat- it hadn't occurred to me that a 16 yo could lose control of her bladder...) and was pretty scared. I got into the doctor that same day who miraculously recognized the unusual pattern on my EKG and diagnosed me with Wolff Parkinson White syndrome, and referred me to the cardiologist, whom I was able to see that same day.
They started me on medicine and then scheduled surgery for a few weeks later. The short explanation of WPW according to my unprofessional self is that I was born with an extra little pathway on my heart which would basically cause my heart to short circuit and contract and contract and contract. The surgery shocked and killed this pathway and that was supposed to be the end of my heart trouble.
Unfortunately, I continued to pass out. We went back to my same cardiologist once, who told me that I was predisposed to passing out, and that sometimes teenage girls just do. Hmmmm... fishy, huh? Needless to say, he no longer is my doctor, nor does he practice medicine.
Anyway, the summer of 2005 was downright chaos. I was working 48 hour weeks in a factory, fighting continually with my parents about my upcoming wedding, and worrying endlessly about the tumor in my little brothers' brain. JD had just his first two surgeries, nearly back to back. I woke up one morning to the sound of my alarm, which sent my heart racing. I watched the room tunnel out, nearly completely back, and then things returned to normal. Nothing different than what had happened many times, but for some reason, this time it really worried me. I was convinced something wasn't right.
Long story short, we go back to the doctor who sends us back to the cardiologist (a different one). We were informed that I 'might' have Long QT Syndrome, but they were consulting with a specialist first. I go home and google it (of course), and am nearly positive that that's the case. We wait a few days and finally my mom receives a phone call. Let me preface this conversation first with reminding you that she, within the last two months, has been told her 9 year old has a brain tumor, and then watched him undergo two invasive brain surgeries. So the doctor calls...
"Ma'am. Your daughter definitely has Long QT Syndrome, and her condition is lethal. The only difference between what her last attack was and what her next one could be is that she woke up. We usually treat with medicine, but because of the severity of her condition, we think surgery is necessary..."
Mom relays the message to me, and I keep it together while talking to her, then call Jordan, tell him, hyperventilate and pass out. Seriously. :) We schedule surgery, it ends up being postponed until 4 days before our scheduled wedding, so we postpone the wedding and all is well. Phew.
  This is the equipment I have inside of me. It was implanted underneath my left pectoral muscle, and has wires that run from the box into my heart. It's basically a little computer that is always running and checking and rechecking an EKG. When my heart goes outside of certain parameters, it charges up and rechecks. Normally my heart corrects itself on its own, but last April my defibrillator probably saved my life.
Now, the batteries are about dead , so tomorrow they will open me back up, take the box out, pop the batteries out, put new ones in, stitch me back up.
I'm a little nervous. It was incredibly painful last time... I'm hoping that since the muscle is already accustomed to the equipment being there that it won't be so bad, but we'll see.
That's probably way more than you ever wanted to know, but oh well. One other neat tidbit- my electrophysiologist can find no recorded cases of anyone else having both conditions. He says it's like being struck by lightning twice. Aren't I a lucky one?! ha. It is amazing though, that with all my sports and miles and miles of running that I never had any trouble with my heart doing those thing. God has protected me, of that I'm certain.
Anyway, I've got to go do some cleaning to prepare for the next few days in the bed. I'll check back in once I'm feeling good... which I'm praying will be soon.


  1. Praying for you sweet girl!! Love you so much!

  2. I'm praying like crazy for you girl. We still live close for two more weeks so let me know if you need anything.

  3. Kristen! I'm praying for you, your little peanut inside of you, and Jordan and the kids!

    The strength you have amazes me, and I can only hope to one day be as great of a wife and mother as you!

    I know that we never got a chance to really get to know each other, but reading your blogs, and the little time I did spend with you has been such an encouragement to me, and I am always blessed by reading the blogs.

    Praying for you guys, love you!

  4. Thank you for writing about LQTS! I have it as well and have an ICD (on my 6th one in less than 9 years due to recalls,battery depletion,etc). I was 15 when I started fainting and was quickly diagnosed. I thank God that my parents were so proactive about finding amazing,intelligent doctors! I went into cardiac arrest 14 times when I was 22 and had the ICD implanted. Thankfully I've been great ever since and am currently 4 months pregnant with our first child : ) so far,so good,my doctors have told me that post partum is a more unstable time so I'll have lots of support and help. Good luck to you and God bless!

  5. Wow, I'm not sure how I missed this post last week. I'm glad you explained things. I had wondered exactly what was going on w/your heart.
    I read on your f.b. that you were recovering and doing well. Praise the Lord for that!
    Oh, and happy birthday to Corban! I can't believe our boys are 3!! Where has the time gone?

  6. There is LQT in my family. Me and two of my sisters, my daughter. 2 of my nephews are borderline. What's interesting is that one of my nieces has WPW but not LQT.


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