What It Means for Me to Still Be Standing

When I was diagnosed with dilated cardiomyopathy in 2014, I didn’t know my life would change so drastically. The impact it has had on my life is beyond belief — even more so is the fact that I'm still standing.

Uncertainty is around every turn

My family and I had to do research about cardiomyopathy when I was diagnosed because we didn’t know anything about it. I was diagnosed at 25 years old, so it was definitely a shock to my whole life, because what 25-year-old is thinking about heart disease? Most 25-year-olds are busy planning their careers, planning weddings, and making life plans. I was faced with this disease and thinking, "Will I even make it to 30 years old? Will I even have a life to plan for?"

So many times, we make plans for things without even thinking that around every turn is uncertainty. One day your life is going great, and the next thing you know, you receive a diagnosis that will send your whole life into a frenzy.

Realizing this was my new reality

Never in my wildest dreams could I have ever imagined that I would not only go through a heart disease journey, but I would come out a survivor. I have been through so much, starting with a stroke that happened prior to my diagnosis.

When I was diagnosed with dilated cardiomyopathy, it was a shock because, throughout the whole process, I had to process the diagnosis on a mental level first, and once that was over, I had to realize that this was my new reality.

After being diagnosed, I was told not to get pregnant because my heart wasn’t strong enough to survive a pregnancy. This was another shock to my system because I wanted to be a mother one day, and I cried a lot after being told that.

A diagnosis of advanced heart failure

Four short years later, I suffered another stroke, and this time I was sent to inpatient rehabilitation for what we thought was supposed to be a long time but instead was less than a week. I was then released.

I was brought back to the hospital because my parents noticed that I wasn’t myself. It took the hospital almost 2 weeks to establish that I was in advanced heart failure after a right heart catheterization. Because I was in advanced heart failure, the doctors recommended a left ventricular assist device (LVAD).

Adjusting to life with an LVAD is difficult

An LVAD is a mechanical support device that assists the left ventricle — the left lower chamber of the heart — in pumping blood to the rest of the body. The main pump is inserted into the heart, and blood is pumped through a tube connected to the aorta. A cord connects the device through an opening in the skin to an external battery pack and control unit outside the body.¹

It is very difficult for anyone to adjust to living with an LVAD, and it really is life-altering. I had my LVAD for a year while I went through the process of getting on the heart transplant list.

We were notified that I was on the list in December of 2019, and on February 2, 2020, I got the gift of a new heart. The heart journey doesn’t end when you get a heart transplant, but it's definitely a tradeoff for other problems.

I try to enjoy life to the fullest

When I look back over the last 10 years, I can’t help but feel blessed. Every day that I wake up, I consider it a gift. I live life to the fullest, and I try to enjoy every second, because tomorrow isn't always promised. So many people, both strangers and friends of mine alike, have passed away from different forms of heart disease.

I live my life for my heart donor, even though I don't know their age or sex; because of HIPAA laws, my doctors couldn’t tell me. When I wrote my letter to the donor's family, they never responded. I learned that this is typical of the donation process. Many families choose not to respond to the recipient of a donated organ for a variety of reasons.

I went from wondering if I would make it to 30 to now, when I’m 36 years old. The fact that I am still standing is only by the grace of God.