two is better than one? i beg to differ.

Tuesday, September 18, 2012

my momma & i before my replacement
surgery in april 2010
I think most of you know by now I have a rare heart condition called Long QT Syndrome. When I was 14 was when my first pacemaker/defibrillator implant was put in, and when I was 21 my replacement surgery was done. While it affects me, it's not on a daily basis and I live a really normal life.

On July 18, my heart didn't respond to the paces it was getting. Normally, my heart would be under 40 bpm. I could feel my heart being paced, tried taking deep breaths and getting drinks of water but nothing was changing. I continued to be paced off and on for 4 minutes. It began pacing for longer. I was paced at one point for 25 seconds straight, which is long compared to my normal paces. When my heart continued to not respond, I was "paced to delete" (sorry if that's not the real title, i think that's what they said it's called). I was essentially paced   as hard and fast as it could until my heart responded. I could actually see my shirt moving as I was paced so hard. It was uncomfortable and I felt dizzy and sick afterwards. I had no idea what happened until I went to the doctor for a regular pacemaker/defibrillator check about 2 weeks ago. 

I met with my electrophysiologist today to figure out what happened, and for my annual check up. What happened on July 18 had nothing to do with my Long QT syndrome. My pacemaker is not designed to "pace to delete", it responded to what my heart was doing. The upper chambers of my heart have a short circuit and it was firing off, causing my pacemaker to respond until it went into "pace to delete" mode to stop it. While this isn't bad, we don't want it happening. My doctor said I may never have another issue with a short circuit, but I also may.

If I do, we'll start the conversation of medications vs. ablation surgery. Ablation surgery would essentially mean he'll go through the groin or my neck, burn the short circuit to stop it, and the pacemaker will then serve a purpose to help if my heart beats slower after surgery. 

He also mentioned something called SVC, but I'm looking up exactly what that means... So right now, we're waiting to see if a short circuit in the upper chambers of my heart fires off again. I'm in the process of getting an at-home pacemaker/defibrillator reading device so should something happen again, I can send a report of it via phone lines to my electrophysiologist. One thing that can cause it is caffeine, and while I really don't have caffeine, I do love my chocolate. I'm going to try giving up caffeine to help with everything...wish me luck.

While I'm not worried, I'm just a sort of random mix of emotions about the whole thing. My doctor wants to see me again in 6 months instead of a year. This is such a crazy year for me already with school and student teaching, I'm a little unsure how I feel about this on top of it all. I know it's not life serious, I know my world is not being flipped upside down. But it's a little strange to me to think that I've got 2 heart conditions to keep track of. 

I am very blessed though. Blessed to know I have Long QT Syndrome and a short circuit in my heart. Blessed that Austen is so dedicated to a career in the Air Force which provides top notch health insurance for us. Blessed that it's nothing horribly serious. I'm blessed to have doctors that can find these sorts of things and keep me calm throughout it. But most of all, I'm blessed that I have a loving and supportive husband, family, and friends. 

There's always a silver lining in the clouds, right? And Panera Bread close by to hospitals, with dads and husbands who don't mind getting you soup. At least, last surgery there was ;) 


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