I was 39 years old when I was diagnosed with heart failure as a result of cardiomyopathy. Part of me was grateful that I wasn’t just crazy…the untimely fainting episodes I’d encountered over the previous months had left me wondering. One severe episode which left me so exhausted I had to crawl across the floor to get to the phone, I had a friend take me to the ER. My EKG and labs all came back normal, leaving the doctor to surmise that I must have had a vaso-vagal episode. Not even a month after that visit, I fainted at home with my (at the time) 11-year old son. I fell backward and hit my head on the stove, briefly knocking myself unconscious. He was terrified. I was more than a little unnerved.
This time, when seeing a doctor, he ordered an echocardiogram. A week later, after finishing the test, a cardiologist came into the room and sat down with me. She explained that the ejection fraction of my heart was only 20%, and that a healthy individual’s should be 55-70%. In a rather nonchalant way, she stated “you have cardiomyopathy.” Then, after noticing the fear in my eyes, she added, “it’s okay, we have a great clinic here. You’ll be fine.”
Cardiomyopathy. That doctor had no idea what that word meant to me. That word was a terrible curse. My family had been well acquainted with its mission. My younger brother, Aaron, was a healthy 12-year old skateboarding, basketball-playing kid, when his heart suddenly went into complete failure. At the time (1989), doctors believed the damage to his heart was caused by a virus. In 3 months he deteriorated to the point he could barely sustain life. In October of 1989 my little brother received the most beautiful and selfless gift – a new heart. 10 years later, my 3-week old niece (Aaron’s daughter) went into heart failure. She, too, had cardiomyopathy. I watched her little body get poked and pinched. I watched my brother’s agonizing wait, as he prayed there would be a miracle for his little girl too. In June, 1999, when Gabriella was just 2 months old, she received her new heart.
So that word, cardiomyopathy, carried a bit of weight with me. I knew there was no cure. I felt like I was getting a death sentence. My brother was the first person I called…I needed to talk. Aaron has a natural way of putting things in perspective, and helped ease my initial distress.
It took a couple weeks to get in to see a cardiologist. Those 2 weeks were horrible. The not knowing what to think, not knowing what to expect. I hated it. I just wanted more information. I felt like if I had more information I could handle the situation better. That really wasn’t the case. I had a hard time acknowledging fear, and the unknown. That was the reality. After the 48 hour holter monitor test, the doctor referred me over to electrophysiology, recommending and ICD implant. He’d noticed a dangerous dysrhythmia during the holter test, and felt strongly that dysrythmias were responsible for the fainting episodes as well. I was also started on a heart failure medication regimen.
3 months after my initial diagnosis I received my bi-ventricular ICD implant. I was a candidate for resynchronization therapy, so I received a defibrillator with 3 leads, which also paces and synchronizes the ventricular rhythm. With the medication therapy and the resynchronization, my heart’s pumping ability has nearly doubled since last year. I am so very blessed and grateful!
The cardiologist, upon learning of my family history, advised me to get my 3 children checked for cardiomyopathy as well. As it turns out, both of my sons have the condition, though not yet symptomatic. Both are under care of a pediatric cardiologist, and have begun medication therapy. My older (14-year old) son had to give up playing basketball, just as he was entering high school. That was the hardest thing for me to accept out of the whole deal. Basketball was his passion since he was in 1st grade, and he was an excellent player. He dreamed (we all dreamed) of playing through high school and college, maybe even getting a scholarship. My mother’s heart just ached for him. I did everything I could think of to try to find some way to bend the rules, or work it out for him to still be involved with the team. I think he let it go before I did. It took a little while (and his dad told him he couldn’t sit around and play video games – he had to get involved with SOMETHING), but he eventually became, and is currently, an active member of the school’s theater group. He even won “Techie of the Year,” which is quite an honor for a freshman.
I have a beautiful life today. I am so so grateful I started fainting (I had no other symptoms). Through my diagnosis, my boys’ condition was caught early and is being treated by skilled professionals. Though I was reluctant to let it go, I’m so grateful my son will not be one of those tragic stories – “teen collapses on court, dies from an undiagnosed heart condition.”
Cardiomyopathy has taken on a new meaning for me in recent months. It represents a common bond with my brother, niece, and both of my sons. Therefore it now means support, love, perseverance, compassion, empathy…overcoming…journey.