5 Things I Wish I Knew Before My Diagnosis

In 2014, I was diagnosed with a form of heart disease called dilated cardiomyopathy. This is when the ventricles become enlarged and can no longer pump blood efficiently.¹

Before the diagnosis, I suffered a stroke and thought that would be the worst news. Being a former athlete and always leading an active, healthy lifestyle, this was shocking to me and my family. It was and still is one of the biggest shocks of my life.

Sometimes I look back on my heart journey, and now, with a heart transplant, there are things I wish I had known before I was diagnosed.

1. This diagnosis is a big adjustment

I never knew how big of an adjustment it would be when I was first diagnosed with dilated cardiomyopathy. I think that the medication regimen was one of the hardest things to remember because I was diagnosed at a young age.

Learning the names of the different medications and what they interact with was also an adjustment. For instance, when I was on warfarin, I had to watch my vitamin K intake, so I couldn’t have a lot of leafy greens. This is because it encourages blood clotting, and since I had already suffered a stroke, I was at high risk of having another one.²

Limitations on what I could and couldn’t do is something that I had to get used to as well.

2. Heart disease can happen at any age

I wish I knew that it could happen at any age and it’s not an "elderly disease." I don’t know what it is, but people think that we are immune to getting certain diseases at a young age.

If I had known that I would get diagnosed in my 20s, I probably wouldn’t change anything except knowing the symptoms. I was already leading a healthy lifestyle before being diagnosed. I was always the healthiest one in our house growing up and always participating in sports. I was in sports up until receiving my dilated cardiomyopathy diagnosis, and then I had to stop.

3. It was hard for my family

I wish I knew that it would take such a toll on me and my family. I often feel guilty because of the many hours my family spends on me when I’m in the hospital. Having my parents still have to take care of me made me feel like a burden.

I also wish that I knew that it would progress so quickly after getting diagnosed. It took only 4 years from the time I was diagnosed with dilated cardiomyopathy until I was diagnosed with heart failure.

4. I wish I'd learned more

I wish I knew more about and was more educated on strokes and heart failure. Both of my strokes caused symptoms that I didn’t know about, and if I had known I was at risk, I would’ve been ready for it. I wish that I had known my dad’s side of the family had cardiovascular disease, and the doctors could have started checking my heart while I was growing up.

Heart disease doesn’t always show up during a routine physical, but some show up on cardiac tests like a EKG or an echocardiogram. My family and I should’ve let my primary care doctor know that heart disease runs in our family and that they needed to investigate.

5. I wish I'd known that I would survive

Last, but not least: I wish that I had a crystal ball to know I would’ve survived what I thought was a nightmare, but now I am grateful that I went through what I went through, because it made me who I eventually became.

I know that sounds crazy, but the experience really shaped me, and now I'm more empathetic toward people because I know what it’s like to struggle. It forced me to grow up, mature, and become a stronger person at a young age.

What are some of the things you wish you knew before your diagnosis?