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This is a photo of my girls and I when I was asked to speak at a fundraiser for a gala. I spoke on some of my patient experience. The money raised went to help build a hybrid cath lab to perform lead extractions safely. 

What SADS condition do you have, and when were you diagnosed?

I was diagnosed when I was 15 years old with LQTS Type 1.

When did you get your ICD?

In 2011 – so I was 30 years old when I got my ICD.

What factors went into the decision to get an ICD?

I had been having some fainting episodes, even while I was on high dose beta blockers, and we put in a loop recorder, and that loop recorder caught some Torsades. I got an ICD right after that, because I was maxed out on the amount of beta blockers that I could take.

How many ICDs have you had?

This is my fourth ICD, because I’ve had a lot of complications from it.

I had my first ICD for about four years, and then I bent over and I picked up a heavy bucket of rocks. And when I did that I pulled my leads out, so they were not positioned in the correct spot anymore. And that caused some pacemaker syndrome. So every time I would bend over again, those wires would get close to touching, and it would pace my heart inappropriately. It took a while to figure out what was going on, but then I had to have a lead extraction, and I had to have a new ICD put in. I then needed a pocket revision after that for some problems with positioning and then a couple years later, I had what’s called SVC Syndrome (Superior Vena Cava Syndrome). From where the leads were, it caused a lot of narrowing from scar tissue. And I ended up getting blood clots in my SVC, and I had to be in the ICU for a couple of days. After they got rid of the blood clots, I had to go in for another lead extraction so that they could put a stent in.

A couple years after that, I ended up having return of symptoms from the SVC syndrome. And they took a look and I had another narrowing up above the stent. So they were trying to decide what to do, because every time I would have the leads in my SVC, it would cause more of a narrowing. They decided that they would take everything out, take my ICD out, do another lead extraction. And then I ended up getting another stent and a pacemaker. And an S-ICD this time instead.

What’s your experience with an S-ICD?

I actually hate it, because it’s so big, and it caused a lot of pain on my side, and I couldn’t move my left arm for very well for almost a year. He actually had to go in and reposition that S-ICD.

Have you ever been shocked by your ICD?

Yes – inappropriately. It was from something that is very, very uncommon. My ECG just all of a sudden looked different. I had a change in the waveforms. I have a separate pacemaker, and they don’t talk to each other. So when I had that rhythm change, it fooled my ICD. I was walking on the treadmill, and I got shocked while I was awake.

It was very painful and knocked me down from the treadmill. I saw a flash of bright white light. It took me a few minutes to be able to get up.

What was your experience recovering from your ICD surgeries?

The first one I had was just placed under the skin and was not very painful to recover from. The second one, I had a subpectoral placement and that was harder. It was painful for a few weeks.

Very few people have the same system that I have – I’ve only found three people. So my recovery from my S-ICD surgery was probably a lot different than most people’s recovery would be.

What is your overall view of your ICD?

I know that I need my ICD because I’ve had documented Torsades, even being on beta blockers. So even though I don’t like some aspects of the ICD, like the pain that it’s caused, or the inappropriate shock, I’m still glad that I have it. It allows me to be with my family. And for us not to worry. It also allows me to take the medications I need to treat my Lupus and be safe.

How did you get involved with the SADS Foundation, and how has it been helpful?

Right after I got diagnosed, I was a teenager, and I had to quit everything, all my sports, because not as much was known about LQTS then. And that was such a hard time, I was so upset about it. I was kind of mad at the whole world for a little bit. But then I decided – I can either let this negatively influence my life and I can be mad, or I can teach other people about it so that they could not be so afraid. And so I did. I had one of the paramedics that actually took me to the hospital one of the times from passing out help me. And we put on a big informational session. After that I felt so much better, and the people I was around – my family, my friends – felt a lot better because they knew what they should do if something happened.

Right after that, I found SADS through Dr. Etheridge, because she was my doctor at that time. And I’ve been volunteering ever since then. I volunteered with my family, and now with my kids. SADS makes a huge difference in people’s lives.