I live a mostly “normal” life. I call it “normal-ish”.

My name is Lauren Donoghue-Cinelli, I’m forty years old, and from the Boston, MA suburbs. I’m married and work in marketing for an events company. I live a mostly “normal” life. I call it “normal-ish”.

I was first diagnosed with hypertrophic cardiomyopathy in 2000 at age 16. I had been diagnosed with a heart murmur and was referred to a pediatric cardiologist who made the HCM diagnosis.

HCM runs on both sides of my family. After it was detected in me, my parents and brother were all
tested. My dad was also diagnosed with HCM after me, and a few years ago my mom got a call from a family member letting her know that it was detected on her side as well.

Because I was diagnosed at age 16, I had so many other things on my mind. I was caught up in the wonder that is high school, getting my driver’s license and applying for colleges. I took it in stride. It wasn’t until about two months after I was diagnosed that I saw a pile of papers on our family desk that my mom had printed out, all about HCM. The word "sudden death” shouted at me from the paper. I stuffed those papers under my jacket, jumped in my car, and went to my best friend’s house to read them. It was the first time I was scared. Seeing those words really freaked me out. Luckily, I had a great support system with my friends, who even came up with a funny name for HCM to make me laugh.

Eventually, I started to forget about it, for the most part. I lived my life. I went off to college, studying political science and hospitality/event management. I had some fun years during college, and up to this point, I didn’t have any symptoms.

During a yearly visit in 2005, my cardiologist suggested I go to an HCMA-recognized Center of Excellence (COE) so they could evaluate whether or not I needed a defibrillator. I was shocked. After all, my
grandfather had had a defibrillator (non-HCM related). I was way too young for that! Plus, I still didn't have a single symptom. I met with an amazing team of doctors at the COE, and together, we decided that an ICD was right for me. Two months later, I had my first ICD implanted, and guess what happened? Absolutely nothing!  For seven years, I continued to live life as normal, with no symptoms.

It turns out that I am lucky we made the decision to get an ICD because that device ended up saving my life.  The first time my ICD fired was seven years after I received it. One night while eating ice-cream and watching TV with my boyfriend (now husband), I started feeling off. I couldn't pinpoint what was wrong. I just felt strange: a little clammy, nauseous, maybe a little dizzy. After a few minutes I said, "Walk with me to the bathroom, I want to splash some water on my face; I took three steps and felt myself start to pass out. The ICD fired once and shocked me back into rhythm. It was incredibly scary! I took my first ambulance ride and was admitted to the hospital. It turns out, this was my first bout with atrial fibrillation (a-fib), which had turned into ventricular tachycardia (VT).

That was the beginning of my symptoms. Just a random, quiet night on a couch, watching television.

Over the next few years following that ICD shock, I had many bouts with a-fib, a few rounds of cardioversion, an inappropriate ICD shock (while I was driving alone, that wasn’t fun!), four ablations, and many medications to manage my HCM. None of this is easy. I suffered from PTSD after both ICD shocks. After the first shock, my EP told me it was totally normal. After a while, it went away. After my second shock, even though it’s been a few years, I still deal with the lingering effects. Driving alone is a little scary for me now.

See? “Normal-ish”.

I get asked frequently how I manage all of the appointments, doctors, health insurance, the mental side, and I can tell you this: I don’t have a handle on a lot of it, but I’m very organized, and I know that the most important thing I can do is to control the things that are controllable. I can’t predict when the a-fib is going to come, but I can be as prepared as possible when it does come.