Ashley Shepherd's Story

My story begins on February 3, 2003. It was just another ordinary Monday. I finished with my classes for the day at Hoover High School in Birmingham, Alabama and headed to basketball practice. My basketball team was preparing to play for the area tournament in the state playoffs. Running, dribbling, and scrimmaging - it was something that I had always done. Sports had been a part of my life since I was five years old. I loved everything about sports. I had played pitch and catch with my dad in the yard since I was two years old. My favorite person in the whole world was Javier Lopez – catcher for the Atlanta Braves. I was now fifteen and playing on the varsity basketball team. I considered myself a good athlete and in very good shape. However, on this day, my life changed forever. Around four o’clock, after taking a routine water break, my teammates said that it looked like I was bending down to tie my shoe but I slumped back against the wall. After calling my name and getting no response, they knew something was terribly wrong. I was there on the court lifeless, limp, blue in the face and unresponsive. At the age of fifteen, I had gone into cardiac arrest. One of my teammates ran upstairs to get our athletic trainer, Coach Sheppard, while my coach ran to get the external defibrillator. The defibrillator was located only a few yards from where I had fallen. The trainer arrived within a few seconds after my collapse. He began performing CPR along with another coach. After three minutes of CPR and three shocks from the external defibrillator, my heart went back into a normal rhythm. I was taken to Children’s Hospital and remained in and out of consciousness for three days. I remember very few details about my stay at the hospital. I was in the ICU for 5 days and during that time I only remember two things. The first was waking up and seeing my dad sitting next to me. I still remember what he had on (blue jeans with a red polo shirt and Timberland shoes). I remember asking him if I was going to die. Little did I know that I already had. The only other thing I remember was Kyle, the handsome nurse who took care of me. He had dark, wavy hair and glasses. It is funny how the brain works. Of all that went on, the visitors that came to see me and the hours my family spent with me, I remember those two things. After numerous tests, the doctors diagnosed me with a genetic heart disorder known as Long QT Syndrome. They implanted a pacemaker/defibrillator (ICD). After five days in the hospital, I just wanted to go home and get my life back to normal as best I could. Soon, I realized that my life would not be normal - no more basketball, no more softball, no more competitive sports of any kind. However, this story is not about what I could no longer do, it is about how my story became my passion.

In the toughest moments, I recite my favorite bible verse, Romans 8:28 – “God works for the good of those who love Him, who have been called according to His purpose”. I have always been interested in the medical field. Growing up playing sports, I always thought I would become an athletic trainer, physical therapist, or even a physician assistant for an orthopedic doctor. Medicine, specifically sports medicine, fascinated me. During my last two years of high school, I was able to work with Coach Sheppard (the athletic trainer who saved my life) who was now a trainer at Birmingham Southern College in Birmingham, Alabama. This experience convinced me that I wanted to follow in his footsteps or go into physical therapy. After graduation from high school, I enrolled at the University of Alabama taking classes for a degree in Exercise Science. I hoped to apply to PT school at UAB.

However, early on an August morning during my sophomore year in college, God had a different plan in mind. I was at my house off campus in Tuscaloosa and as soon as I got out of bed that morning, “bam”, my ICD shocked me. This was the third time I had been shocked in the two years since my ICD was implanted. As I sat on the edge of the bed calling for my sister (who was sound asleep in the room next door), “Bam”, I got shocked again. I did not want to move at all. I felt scared and paralyzed. How could I keep this device from shocking me again? Since it was a Saturday, my pediatric cardiologist, Dr. Lau, told us to meet him at his office. He would be waiting for us with a representative from St. Jude Medical who could interrogate my device. That is where I met Craig Bernard. God’s wheels were in motion. He had never checked my device because Barbara, Dr. Lau’s nurse, routinely checked my device every few months. However, since it was a weekend, he was on call. Dr. Lau and Craig determined that the lead in my heart had fractured and had caused the device to deliver two unnecessary shocks. The only solution to this problem was to replace my defibrillator lead. Because of my age, they did not want to leave the lead in as it could potentially cause further issues down the road. Dr. Neal Kay extracted my fractured lead and a new lead was implanted. Thankfully, my surgery went as well as could be expected. I was very sore for the next week or two but I had brand new leads and I was happy that I could get back to my ‘normal’ life. During that semester of classes at the University of Alabama, I began to question my chosen career path. I felt the Lord was calling me to a different purpose in life. Not coincidentally, Craig Bernard showed back up in my life for the second time in a matter of weeks. He offered to allow me to “shadow” him and I took him up on that offer not too long after. I was sold. No turning back. I fell in love with everything about his job. He was a Sales Representative for St. Jude Medical. I loved the patient interaction that came with the job. I felt that I had a story to share and that I could help other device patients understand how to cope with living with a device and how to move forward with a positive outlook in life. It seemed challenging and I was up for the challenge. I was intrigued by the complicated workings of the heart and I wanted to learn as much as possible. Over the next few years, as I was attending college, I continued to “shadow” Craig - I loved every minute that I spent with him. I knew that it was no coincidence that this door was opening for me; I knew this was my calling. From then on, I did not worry about how I was going to get a job with St. Jude. I knew it was God’s plan for me and he would make it happen. Craig put me in touch with Kristen Barnsby, a clinical specialist who worked for St. Jude Medical in Huntsville, Alabama. I remember calling her and asking her for advice. What classes should I take? What avenues should I take to get into the business, etc.? We corresponded through email. Doors continued to open and four years later, St. Jude Medical offered me a job in Huntsville, Alabama. Kristen became my mentor! It is funny how the Lord works and who He works through. I knew so confidently that this was what I was meant to do. Everything that I had been through had only made me appreciate my job even more. God says that “ I am certain of this, that he who began a good work in you, will continue his work until it is finally finished on the day when Jesus Christ returns,”- Philippians 1:6. This verse was my foundation on how I wanted to approach each day of work. I knew I had something to offer to the patients that other people could not. My experiences will help me relate to, teach and offer guidance to device patients and if I can be a positive, Godly example to them, then I am living out God’s purpose for me.

Fifteen years have now passed since I went into cardiac arrest. Doctors first diagnosed my twin sister and me with Long QT Syndrome. We were told early on in the days after my arrest that is what they thought may have caused my cardiac arrest. However, all of the puzzle pieces didn’t fit together for me. I never had a peace of mind about this diagnosis. I am not certain why I never was at ease with this diagnosis but I wasn’t. Post arrest my QT Interval was prolonged. Symptoms correlated but other heart disorders connected to my symptoms as well. Fast forward eight years. Being in the medical field I knew genetic testing had become much more advanced; I took it upon myself to have another genetic test. They tested me for multiple cardiac panel anomalies. It took about six months for the test to come back. Was I ready for the answer? I thought I was ready for twelve years. The day before my 26th birthday my EP in Huntsville, Alabama approached me with the news. He had received the test results. “Ashley, you have Arrhythmogenic Right Ventricular Cardiomyopathy, or ARVC for short.” Being in the medical field and treating some patients with ARCD/C as they had devices, I knew a few things about the disorder. When the words came out of Dr. Tabereaux’s mouth, I immediately broke down into tears. I don’t really know why I was crying. Was it that I finally had an answer and it was a sense of relief or was I scared of having to live with this disease and move forward? Like most patients who learn about a new diagnosis, my immediate response was to get on the internet to find out everything I could about ARVC. While the internet has some great information, it oftentimes isn’t the best source of information. I googled EVERYTHING, and I mean EVERYTHING about ARVC/D. I wanted to know every little detail about this cardiovascular disease. I joined support groups, talked to my doctors, searched patient stories, joined online chat rooms and searched the Johns Hopkins ARVC website. I guarantee that I have read every article about ARVC that the Google search engine gave me. While much of it was beneficial research, I focused on all the negatives. The phrases ‘PROGRESSIVE’,” NO CURE,” “CONTROL” the arrhythmias, only “LIGHT” exercise and “MULTIPLE” ablations, all caught my attention and stuck out in my mind. My mind had blinders on to only the negative details of ARVC. If I ask myself again whether my tears were tears of joy or tears of sadness, I can confidently say that they were very much tears of sadness – sadness because I was afraid .This was a progressive disease that was completely out of my control. I wanted/needed to be in control. God continues to laugh at this. There was nothing I could do besides stop exercising to slow the progression. I had no clue how I was going to live with this disease for the rest of my life. It was almost like I was starting over again.

According to Johns Hopkins, Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy is a leading cause of sudden death among young athletes,.however it can affect people of all ages and all activity levels. The right ventricle is the chamber of the heart that is affected and dysplasia means there is an abnormality of the structure. ARVD/C is a specific type of cardiomyopathy (a disorder of the cardiac muscle) and as a result, the condition is also referred to as ARVC for short. Simply put, ARVD/C is a genetic, progressive heart condition in which the muscle of the right ventricle is replaced by fat and fibrosis, which causes abnormal heart rhythms. ARVD/C is estimated to affect one in 5,000 people. (hopkinsmedicine.org). Further genetic testing revealed that my dad has the same condition. I am now being followed by my EP in Huntsville, Alabama and by Johns Hopkins. They have great doctors with a wealth of knowledge and ongoing research for ARVC patients. I try to enroll in as many research studies as I can in hopes that I can help improve the future outcomes of people with ARVC.

I still worry about my device and my life with a device – will I get shocked, how much can I work out, will my lead fracture again? I feel like I have been through a lot in my short 27 years of life: cardiac arrest, multiple shocks (some appropriate, some inappropriate), lead fractures, lead extractions, generator changes, you name it. Each challenge presented a different obstacle to overcome. For me, it hasn’t been an easy road. Now that I work in the medical device industry, I see myself in the patients I treat and care for. The challenges they go through are the same that I continue to deal with. Although this disease and the treatment for the disease (the ICD) will never be over, I will not let it hinder my life. Like most patients with ICD’s I sometimes struggle with anxiety, panic attacks and bouts with depression. My hope is that patients can understand that they are not alone in this struggle. With the Lord’s help, of course, support from family and friends, and the ICD patient community, we can overcome whatever comes our way. I have tried to create a local support group because I know the effect an implanted device can have on an individual's life. I have to remind myself that my device is there to potentially save my life and if I can help other patients understand what living with a device is like, I feel like all that I have gone through is (well, maybe one day will be) worth it! My whole experience has made me better at my job and serving my purpose here on Earth. I want to be an example to others and show patients that the one thing that changed my world 15 years ago is now the one thing I am most passionate about. My passion is to be a positive example that life with heart disease can exist. It is not the end of the road for us. It can be a new beginning. We write our own stories. How will we as caretakers in the device industry help those around us with devices write their story? I am working at a job I love, with people that I adore. I realize how blessed and fortunate I am but sometimes it still seems surreal what happened to me on that day – like it is someone else’s story.