How I Found Hope After Heart Failure

I am from a small town in eastern Oregon called Pendleton.

When I was kid, I was diagnosed with Duchenne Muscular Dystrophy. Duchenne causes a progressive loss of muscle strength and is found on the X-chromosome, so it affects mostly boys. I am one of the few females that this disease impacts.

But Duchenne really didn’t affect me too much when I was little. I just knew that I was slower than the other kids. And when I would fall down because my legs were weak and gave out, the other kids at school knew to help me up because my muscles weren’t as strong as theirs.

It wasn’t until I was 20-years-old that I fell down and heard a loud snapping sound. My whole body went cold and I couldn’t get up.

Suddenly, I went from being able to walk to be being confined to a wheelchair. Going from being really active, showering and dressing yourself, to being told you can’t move is terrible. But then, it got worse.

It was after that when my heart condition worsened. The heart is a muscle like the others, so just as Duchenne had impacted my legs and the other muscles in my body, it was starting to impact my cardiac muscle as well.

I began a slow decline into heart failure. I had trouble breathing. It was hard to talk and even eat. I felt like giving up. Like everything was lost.

I went in for a heart catheter procedure in January 2013 so they could determine the extent of my heart problems. While I was lying down on the table I began to feel pressure in my chest and started to turn blue. I was in the midst of full-on heart failure and the doctors told me my time was limited. They said for me to begin making final arrangements.

It was then that I began looking earnestly for help. I was on Facebook one day and that is where I found Jason Williams’ story.

Jason was one of the first patients with Duchenne Muscular Dystrophy to receive a Left Ventricular Assist Device, or LVAD, and he received it at Cincinnati Children’s. A LVAD helps a weakened heart pump oxygen rich blood throughout the body.

I was up in my room when I found his story and I yelled for my mom. She ran to me thinking something was wrong and that’s when I showed her that another person with Duchenne had received this heart device. We started to cry thinking that if they did it for him, they could do it for me. Suddenly, we had hope.

I went to see the doctors in the Heart Failure and Ventricular Assist Device Programs at Cincinnati Children’s in February 2013. It was then that I met the wonderful surgeons, doctors and nurses who would could help me.

I had a HeartWare LVAD implanted in March 2013, just two months after the heart catheter revealed I was in heart failure.

My life slowly but surely became better. I got the color back in my face and skin, I was excited to eat again, to be able to taste food and for the first time in months, I felt alive again. Like life was worth living again.

A few months later I was able to come home to Oregon. I am followed by my healthcare team in Oregon, but I also visit Cincinnati a few times a year to see the experts in the VAD clinic who implanted my device.

I’ve been living with the LVAD for a little over a year and my life has improved drastically. I am no longer retaining fluid in my legs and lungs, I am not coughing or vomiting anymore. I am sleeping well again and can do any activity without feeling short of breath. I am able to hang out with my friends, I attended my brother’s wedding and I have a boyfriend now.

All the symptoms of heart failure have disappeared and, most importantly, all of my organs are getting adequate blood supply.

I’m a person who fights for things, and being able to get the LVAD made me myself again. That was one mountain I climbed up.

When I was in the heart catheter lab in January 2013 and doctors told me I might not have much more time, I cried because I wanted so badly to become a teacher, to make a difference in children’s lives. I honestly thought I would never see the day when this could happen for me. What can someone who has only five percent of heart function do?

But on March 7, 2013, as I was being wheeled into surgery, I prayed and told God that I was ready for whatever his plan for me was.

I am so happy to say that I started school last fall in Eastern Oregon University’s educator program. My goal is to receive an endorsement to teach English for Speakers of Other Languages (ESOL) to children. Signing up for classes felt surreal, such a far cry from where I was last year, recovering from heart surgery.

I went from thinking all is lost to thinking that nothing is impossible.

In fact, ‘nothing is impossible’ is my new motto in life. I’ve battled Duchenne, heart surgery, and this spring, I even got a B in chemistry.

Susie Arroyo

About the Author: Susie Arroyo

Susie Arroyo lives in Pendleton, Oregon, where she is a student at Eastern Oregon University studying elementary education. She is an active advocate for Duchenne research and awareness, and is an avid Seattle Seahawks fan.

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Comments

  1. Eileen Yeoh July 11, 09:09
    I heard about your story as I was preparing to give a presentation to high school students about Cincinnati Children's this past Valentine's Day. I showed them the YouTube video of you, Jason Williams, and other heart patients sharing their story. You have no idea how stories like yours strike a chord with other young people. We are cheering you on here in Cincinnati! It made my day to read your blogpost and know that you are thriving in college. Enjoy the experience! Eileen (Cincinnati Children's Development Department)