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Stories from the ARVD/ARVC Community

Meet Rebecca

I guess it all started when my mom was diagnosed with hypertrophic cardiomyopathy in early 2012. I was 32 at the time. Her cardiologist wanted to do genetic testing on my sister and me, and both tests came back negative — great! Except my echo (echocardiogram) and EKG (electrocardiogram) showed I was having a lot of PVCs (premature ventricular contractions), and there was a small scar on the right side of my heart. Then came the testing: stress test, Holter monitor, blood tests, MRI and the scariest one: a heart tissue biopsy.

After all of that I was hoping for a diagnosis and truthfully expected one, but nope! They knew the PVCs probably came from the scar tissue, but they didn’t know why I had the scar in the first place. I was put on metoprolol and watched. And honestly, I felt fine. If I look back now I could probably say that I had felt the PVCs every day (now that I am all too aware of what they are) and that I had felt my heart “pound” before, but it wasn’t something I worried about.

My husband and I wanted to try for another baby (we already had a 2-year-old son).  I received the go-ahead and we became pregnant that same year. I was probably three weeks along when I went off metoprolol “cold turkey” and was told they would look into another drug to take while pregnant. And so begins my ARVD/C (arrhythmogenic right ventricular dysplasia/cardiomyopathy) story.

Two weeks later, at about five or six weeks pregnant, I was walking to my desk at work and felt a whoosh of dizziness, and immediately my heart started pounding — hard and fast. I got back to my desk, drank water and tried to relax, but my heart just kept beating faster. Being newly pregnant I was worried, so I asked a co-worker to drive me to the hospital. I walked into the ER and the admitting nurse just said, “Wow, your heart is beating incredibly fast.” Immediately I was taken to a room. My heart rate kept jumping higher. It was probably around 200 by the time my husband arrived — just in time for the chaos to break out. The medicine to slow my heart rate didn’t work, nothing did, and I knew something was really wrong when my room was flooded by doctors. I don’t remember most of this (because at around 260 I had apparently passed out), but my husband said the heart monitor just kept flashing at 300. I was shocked, given CPR, shocked again. Then one more shock and I was back in a normal sinus rhythm. All I remember is feeling something or someone pushing me to wake up and saying my name. I don’t know if there are angels watching over us or if it was a nurse talking to me, but I like to think that day I definitely had someone on my side and I believe it was my dad. He had passed away suddenly and quickly the year before, and ironically in the same hospital. In some way I believe he was telling me that it just wasn’t time.

I spent an entire week in the cardiac ICU. They didn’t know why I had gone into tachycardia/SVT (supraventricular tachycardia), but I was put on sotalol and was told that I might need an “internal cardiac defibrillator.” A what? I had no idea what that was and didn’t think much of it. I went back to work after two weeks off — now eight weeks pregnant — with no ICD (implantable cardioverter defibrillator) in my chest and just on sotalol! When I look back on that now, it seems insane and completely crazy! I was basically a ticking time bomb, and there was nothing to protect me if I went into SVT again. But none of the doctors could seem to find the cause. I saw my electrophysiologist a couple weeks later and he suggested blood work for genetic testing. One was for ARVD/C, but the chances of that were slim. Two to three weeks later ARVD/C ended up being the culprit of all of this. I had ARVD/C and didn’t just have one gene for it — I had two.

Now there was worry. I was probably about 15 or 16 weeks pregnant when the subject of an ICD came up again, and they didn’t want to put one in when the baby was so young. Truthfully they had never put a defibrillator in someone while pregnant. My doctors spoke with Johns Hopkins and they recommended that I wear an “external” defibrillator until I was 20 weeks pregnant. Four to five weeks of wearing one of those is enough to drive anyone crazy, especially while pregnant. At 20 weeks I had my defibrillator implanted and thankfully all went perfectly with the baby. But let me backtrack for a minute — there were a lot of doctors involved in collaborating on this procedure, and it took a lot of doctors talking to each other about logistics. My procedure ended up changing some requirements for where they can do heart procedures on women that are pregnant. I wanted to have it done at our best heart hospital and so did all of my doctors, but they didn’t have an OB unit and didn’t allow any OB doctors rights to the hospital. So I had to travel to a hospital with an OB unit and my doctor had to get permission to perform the procedure there. My obstetrician and electrophysiologist had many meetings with doctors just about my case! So there was some good that hopefully came out of my frustrating path to surgery. I believe they are working to allow pregnant women to have heart surgeries at the best possible facility and also receive the care for their unborn babies. The rest of my pregnancy was pretty good and I had a beautiful, healthy baby girl in February 2013.

Almost five years have passed since I found out I had ARVD/C and received my ICD. I’ve never been shocked, but I’ve been paced out of tachycardia many times. I decided I wanted to come to Johns Hopkins and talk about an ablation, and it was the best decision I could have made for myself, my sanity and this condition. Since my ablation in 2014 I still haven’t been shocked and continue to be paced out of dangerous rhythms, but everything is working! Going to Johns Hopkins also gave my husband and me so much information about ARVD/C that we never had before. We learned three years ago that my now 7-year-old son tested positive for both of my genes, which is rare. To say the least it was a gut wrenching kick in the stomach. Knowing how this disease works, I am sad for the restrictions he will have, but right now he can live like a normal kid, and we will just take each day at a time and keep up with his yearly checkups.

I have incredible doctors in Wisconsin and I know that I am very lucky! I have a wonderful cardiologist, electrophysiologist, and an electrophysiologist nurse who allows me to text her with every little “weird” beat or feeling I have, or just run questions past her. That in itself is a gift and she is amazing! I’ve also learned that it is great to talk to someone about all of these feelings that come up when you learn that you have this disease, almost die and how it will affect the rest of your life! Therapy from someone who deals with patients that have heart issues has really saved me.

Like most, I have really good days and really bad days when I worry all the time. This disease has made me furious, sad, panicked, nervous and about a million other emotions! But it has also made me feel incredibly grateful and blessed, and now I will try my hardest to appreciate every single day on this earth and pray for a cure for my son — and everyone else who is on this journey!