Things I Wish I Knew

I started my heart journey at 25 years old and there is so much that I wish I was aware of in my younger years. When I was diagnosed with dilated cardiomyopathy I really thought it was a death sentence because it could actually turn into heart failure. Later in my heart journey when the news came that my heart had worsened to advanced heart failure, I thought it was all over. There are many things that I wish I had known when this heart journey started.

The things I wish I knew at the beginning of my heart failure journey

Age

One of the first things I wish I knew was that heart disease can happen at any age. I was completely oblivious when I got diagnosed, partly because my physicals were always normal.I was always the healthiest and the most fit one in our family, so it was definitely shocking news to us.¹

Family

We knew that my father's side of the family had bad hearts and that my grandfather suffered strokes and heart attacks in his life. I wish I had been educated on strokes and what to do if and when someone is having a stroke. We had no idea I would be dealing with what my grandfather was dealing with at age 25.

Another thing that I wish that I knew was the toll it would take on my family, and all the PTSD that I suffered as a result of my diagnosis. I did, however, become more empathetic as a result of going through what I went through.

I learned that it is imperative to know my family history and my genetic information. My cousin has hypertrophic cardiomyopathy. When the diagnosis came the doctors immediately wanted to do genetic testing to see where the dilated cardiomyopathy was coming from. When the results came back they said that I had a muscle disease and I was also a carrier for muscular dystrophy. The doctors told me that if I had a girl there would be a 50% chance that she would have dilated cardiomyopathy. If I had a boy, there would be a 50% chance that he would have muscular dystrophy. This why I think it is vital to know your partner's family history as well as getting genetic testing before having children.

That it would be so hard to overcome it

This heart journey has been the hardest thing that I have ever had to do. Getting up and fighting for my life on a daily basis has not been easy. Many people are seeing me post-transplant and do not know how hard it was and what I had to go through mentally, physically, and emotionally.

There were many times when I felt like giving up and throwing in the towel. So many tears and pain. I wish I was mentally prepared somehow for my heart journey, but in the same breath, it actually taught me to be resilient. No matter what I was going through there is always someone else who has it worse.

Things will work themselves out

Lastly, I wish I knew that everything would work itself out and be fine in the end. Although I know that the heart journey is never ending, it has made me who I am today and taught me so much about myself. Just because I got a heart transplant does not mean the journey is over, with a transplant comes a slew of other issues. Nothing in this life is promised and I am grateful for the years that this heart transplant has added to my life.