I spent most of my young adulthood being on medications that made me tired, testing my physical limitations, feeling depressed at times from all the things I was missing out on, and constantly struggling with all the changes in my heart health. In the past 17 years, I have had 13 shocks and am on my fourth defibrillator.
If I were to pick one quote that would sum up my life, one saying that would in some way explain what my journey has been so far, I would have to turn to the immortal words of Bob Marley. "You never know how strong you are, until being strong is your only choice." If you have any social media, there's no doubt that you've read his words and that special quote floating around somewhere on the internet. It's often used as a motivational quote for people who are struggling through some type of difficult moment in their lives. Those words have been my life.
When I was young I was far from strong. I hated running because I was always the slowest and struggled to keep up. I constantly fell down, scraping my knees and crying until my mom or dad would pick me up and make things all better. I often complained of being tired, taking naps after school, and not wanting to play. I also had allergies that caused me to have trouble breathing, and was home sick from school pretty regularly. When I was 12, my school required a physical from a physician before being allowed to partipate in PE class. It was there that my physician addresed some of my concerns like trouble breathing during activity, chest pain, and fatigue. The doctor decided I had exercised induced asthma and sent me on my way. I would take my inhaler and just "take things slow" during any physicial activity. I even joined the volleybll team and wouldn't run during practice.
At the age of 13 I had my first real test of strength. I was training for a 5k walk/run that our school had and every 8th grade student was required to participate. I walked, took my inhaler when I felt breathless, and stayed toward the back with the teachers. Toward the end of the practice I ran up a few feet to catch up with some of my friends. That was the last thing I remembered. My heart had gone from a fast heart rate, to ventricular fibrillation, a quivering heart muscle, followed by cardiac arrest. My PE teacher performed life saving CPR for serveral minutes until the paramedics arrived and rushed me to the hospital. It was there I underwent surgery to have a implantable cardiac defibrillator. I woke up a week later after being in a drug induced coma. The diagnosis was Hypertrophic Cardiomyopathy, which is a thickening of the heart muscle tissue. This is a congential disease, often genetic, that affects 1 in 500 people. The symptoms are trouble breathing (especially during physical activity), chest pain, lightheadedness, fatigue, fainting, and the first diagnosis is usually after a cardiac event. This disease is the number one killer in young athletes and is often undetected without an EKG or ultrasound of the heart. Another name for this heart disease is sudden death syndrome. The national survival rate of a cardiac event outside of a hospital is 6%. I am the 6%. I woke up to the new diagnosis with a machine in my chest. It was time to get strong.
In the first month after getting home I learned just how strong I would have to be. I went to a friend's house to go swimming and ran up one flight of stairs so excited to put on my suit. Then I felt it. A punch that felt as if it was coming out of my chest. Instictively, I looked behind me to see if my friend and ran up behind me and hit me. There was no one there. My defibrillator detected a dangerous rhythm and delivered its first "Therapy", a shock to the chest at over 700 volts. Naturally I panicked as any 13 year old would do and was delivered another four shocks. This was followed by two shocks at a school that same year. One shock going up a couple flights of stairs on the first day of my Freshman year of high school. My best friend caught me when I was 17 after walking up a light of stairs and was delivered another shock. A shock at a family friend's wedding while dancing. Two shocks while walking up a hill camping when I was 16. Finally my last shock at 19 when I was out with my friends. In the past 17 years I have had 13 shocks and am on my fourth defibrillator.
I spent most of my young adulthood being on medications that made be tired, testing my physical limitations, feeling depressed at times from all the things I was missing out on, and constantly struggling with all the changes in my heart health. I was being seen regularly by two cardiologists, and being told time after time they didn't know how far I would progress. And suddenly around 21 years old, it just stopped. I had finally had a time of rest. That lasted about 5 years until I developed a new sympton, neurocardio syncope. Basically because of the excess tissue in my heart and irregular structure of the muscle, my brain was getting the wrong signals from my heart in regards to my blood pressure, and I would fall unexpectantly. The doctors changed my medication again and implanted a new cardiac defibrillator that would hopefully help manage the changes easier. That seemed to do the trick.
The following summer of 2013 I broke my ankle and was unable to walk for almost four months. After all I had been through with my heart disease, that was the easiest challenge I had to face. I had become much stronger, knew I could handle whatever was thrown at me and would be just fine. A year after that in 2014, I used all that strength I had gained and decided to see just how much I could do. I joined some groups fitness classes, started working out with friends, and found a new self I had never seen before. I liked the workout. I would get up every day and head to the gym for 1.5 hours and feel great after each workout. I had in my mind pleateaued, which can happened for some people with HCM.
It was that year that I had been nominated to join a group of women know as the "Heart Heroes." A Heart Hero is a woman who has come back from cardiac illness and has not let it stop her. This was followed by participating in my first 5k after 15 years since my cardiac arrest. I had all my new sisters with me. Joining the Heart Heros opened up a new door for me with the American Heart Association. I had learned that by telling my story, I was able to affect people in a way I never imagined before. I volunteered my time regularly telling my heart story, teaching CPR and assisting the AHA in raising funds for cardiac awareness and research. This gave me a sense of confidence I never knew I had. Little did I know all of this was preparing me for my biggest challenge yet.
In the fall of 2015 I noticed some difficulty in my workouts. I started having what I called "bad heart" days. Those days I struggled to find the energy to get out of bed and often struggled to get through my work day. I was a student applying for a competitive program in dietetics, self employed and volunteering regulatory. Like any woman I assumed I was just stressed and needed more sleep. As 2016 rolled in the workouts kept getting harder, my energy levels kept going down, and often times I would feel faint. I kept making excuses saying I haven't eaten enough or was overworked. Until I couldn't ignore my symptons anymore. I was walking out of a grocery store with my boyfriend during Fourth of July weekend and collapsed into his arms. It was then I decided to make an appointment with a cardiologist. After fainting during a routine visit at the Univeristy of Michigan Hospital, I caught the attention of the doctors in their cardiovascular clinic. For the first time ever in my life I had an appoinment with someone that specialzes in HCH. She ran some tests and walked in to deliver the news. I will never forget that moment. She walked in, took a deep breath, sat down in front of me and said "I am worried about you."
It seems that my heart after all these years of strain from working with this disease is finally tiring out, and I am in stage three heart failure. I am not tolerating medication well and have progressed in my symptoms. Most days I struggle with varying degrees of fatigue, lightheadedness, nausea, chest pain, dizziness, and breathlessness. I am currently being screened for a heart transplant.
My friends and family stepped up to help by setting up a gofundme campaign, supporting me emotionally, cleaning my home when I can't, taking me to get out of the house, and helping me go to my doctor's appointments. They even gathered a group to run the 5K race I used to run, in my honor. In the moments when I can't be strong, they are there for me. I was honored to be asked to share my story at the Washtenaw County AHA Heart Ball. At the event I was able to present an award to my PE teacher who saved my life all those years ago.
After all the challenges I have found my true strength. This strength is something that is not unique to just me. It's something that al people who struggle with heart disease have to gain in order to not just strive, but thrive. My heart sister and I found there is only one way to describe this, and it is being a Heart Hero. We use our experiences to create an apparel brand dubbed Heart Warrior, which we hope to use to create a support group for those with heart disease, and be a community of peopole to lift each other up. We have a mission to help those who are often the strongest of us all, the pediatric patients. The brave little Heart Wariors are the ones who are resilient and give everyone hope and strength. You never know how strong you are, until being strong is your only choice. Be stronger!!