Accepting My Cardiomyopathy Diagnosis

It took me a long time to come to terms with my dilated cardiomyopathy diagnosis. I was diagnosed in 2014 after suffering a stroke at a fitness competition. At 25 years old, I didn’t understand what dilated cardiomyopathy was, but I knew that this diagnosis would change my life.

I was in denial about my diagnosis

At the time, I didn’t even know what a stroke was, if I’m being honest. Most of the time, young people don’t know about things like this until we deal with it as we age.

At first, I was in denial about my diagnosis. I was still following through with what the doctors told me to do, but being a firm believer in God and prayer, I just thought I could pray it away.

Instead, I ended up getting an implantable cardioverter-defibrillator (ICD), getting a left ventricular assist device (LVAD) for advanced heart failure, and later a heart transplant.

I thought my life was over

Before I was diagnosed with advanced heart failure, I had to learn to live with dilated cardiomyopathy. When I first found out, I thought my life was over, and I became depressed because my loved ones and I weren’t familiar with the condition. What would life be like now? I wondered not only how long I would have to live, but how I would deal with the stress. All these questions bombarded my mind, and I was left feeling confused.

I remember searching on Google for what dilated cardiomyopathy was. In the results, there were questions that other people may want to know about, like the life expectancy of someone living with dilated cardiomyopathy. My mind began to wander, and when I clicked on the results, I was shocked to see the answer of "5 years." I only had 5 years to live? I remember sobbing while looking at the screen.

I'd always wanted a family, and now...

In addition to being diagnosed with this heart condition, I also had limitations put on me. One of them was that I couldn’t have kids because my heart was considered too weak to withstand a pregnancy. When I was diagnosed, the doctors also told me that my ejection fraction was only 10 to 15 percent.

Ejection fraction is the percentage of blood that is pumped out of the heart's ventricles with each heartbeat. This measurement is usually taken from only the left ventricle (LV). While the heart can never pump out 100 percent of the blood from each ventricle, doctors can use this test, among other tests, to see how healthy your heart is. For comparison to my 10 to 15 percent, a normal left ventricle ejection fraction is about 50 to 70 percent.¹

Because of this, the doctors told me that I needed to use 2 forms of birth control, because if I did get pregnant, they would have to terminate the pregnancy. This was a major turn of events, because I’d always wanted to have a family, and now I wouldn’t get the chance to.

New limitations on exercise

Another one of my limitations was that I couldn’t go to the gym anymore after I was diagnosed, because my cardiologist wanted to see if holding off on exercise would be good for my heart. So, from August to December of that year, I wasn’t allowed to exercise.

This was a big deal because exercise was a part of me. I used to compete in fitness competitions as well, so this wasn’t good news at all.

Treating my cardiomyopathy with medication

My cardiologist prescribed warfarin, not only because I had suffered a stroke, but also because it made it easier for my heart to pump blood more normally.

While on warfarin, it's often advised to watch your intake of foods that are rich in vitamin K — like leafy greens — because vitamin K helps blood to clot. So, when taking warfarin to discourage blood clots from forming, that’s the last thing my doctors wanted to happen. This was hard for me, too, because I love leafy greens and salads, so this put a damper on that.²

Receiving an ICD

I started accepting that I had dilated cardiomyopathy when I went for an echocardiogram appointment in December of 2014 and my ejection fraction had only gone up to between 20 and 25 percent. It was decided by my cardiologist that an ICD would be in my best interest. I had taken up flag football as a hobby, but unfortunately, I wasn’t able to continue playing because if I was hit, it could set off or damage my ICD.³

Acceptance is hard, but you'll get through it

My friends and my boyfriend wanted nothing to do with my heart journey after that, so a lot of them left when times got hard. But this allowed me to see who really wanted what was best for me in the end.

Being diagnosed with a cardiovascular disease is hard, but so is acceptance. It's a marathon, not a sprint, and it takes time, but eventually you’ll get through it.