I have been asking a very special and sweet friend of mine to share her heart disease story on my blog for a while now. I met her after I got an email from another amazing friend. The subject of that email was “Heart Disease Sucks.” She could not have been more spot on. Everyone…..if you think heart disease can’t happen to you, well, you are wrong. This story will definitely change who you think the face of heart disease is…….here is my wonderful friend’s story!
My name is Whitney Graves and I have heart disease. Even a year and a half post-diagnosis, I still have a hard time believing this fact. As an adult, I have consciously and consistently maintained a generally healthy diet. I don’t believe I have ordered one fried food dish since college. And exercise has always been a big part of my life. As a marathon runner and triathlete, I thought of my body as being in the best shape of my life. I would have bet thousands of dollars that my heart was way stronger and healthier than any of my family members and that I could have passed any stress test with flying colors. In August of 2012, the week after my 35th birthday, I got a diagnosis that would completely change my lifestyle, my identity and my outlook on life.
At the age of 14, I found my passion for running. I started going to a woman’s health club called Goudeau’s on College Drive. I would run on the treadmill while my mom did an aerobics class. I found this release better than any other, so therapeutic, and I could zone out after a long day with my Walkman or watch a talk show on one of the 20 screens on the TV wall while I put in a good hour of sweaty, glorious pain.
Fast forward to early 2010, still running several times a week. A good friend and fitness trainer of mine suggested I run a half marathon. I had been going through a trying year – I had to have reconstructive jaw joint surgery in Florida and my jaw had to be wired shut for a good six months. Although I was still on a liquid diet and still had a couple more months banded shut, I decided to set this goal that would make me feel good in the midst of the whole jaw situation. Four weeks later, I ran the half marathon in the hills of St. Francisville and won first place. As the next couple of years passed I continued to race competitively, but wondered why I could never really get much faster. I often felt my legs could go harder but my breathing couldn’t catch up. That first race remained my PR (personal record).
At the end of 2011, I started having episodes where I would suddenly, out of the blue, feel shortness of breath in the middle of a run. Just for about 20 seconds. Maybe once every 2 weeks. A feeling like I couldn’t get enough air. I would stop for a second and it would go away as suddenly as it had appeared. Strange, what is that??! I went in to see my general doctor. Running friends had suggested maybe I had exercise induced asthma. He was skeptical, but gave me an inhaler to use before my runs. It didn’t help, the episodes kept popping up.
I ran a half marathon that following January, and with one mile left and in the lead in my age group, I suddenly lost my breath and had to stop and lean over with my hands on my knees. I’ve never had a panic attack before, but I imagined it must feel like that – wanting to breathe into a paper bag like I’ve seen on TV. This one scared me enough to ask my general doctor make an appointment with a pulmonologist. This doctor ran a treadmill test on me and said nothing was wrong with my lungs. He probably thought I was another hypochondriac.
By July, the episodes were happening 50% of the time. Some mild and some where I had to stop for a minute. But the symptoms changed that month. The breathlessness became dizziness. The feeling you get after twirling around in circles for thirty seconds like you did as a kid. I started to look at my heart rate monitor on my watch when this happened and made the discovery that my heart rate was shooting up from 155ish to 210-240 during the episodes. Aha! Mystery solved, it was my heart acting up this whole time.
Off to the cardiologist I go, where he diagnosed me with tachycardia (heart rate that exceeds the normal range). It is a fairly common problem and is very treatable with beta blockers. I had a lower level tachycardia episode while on the treadmill in his office and an abnormal EKG. Nothing too worrisome that the beta blockers couldn’t control. He sent me home with a special monitor glued to my chest to wear for two weeks. He even suggested I run a race or triathlon if there was a local one that weekend. He was curious to see some data while pushing myself for an extended period of time.
Several days later, I decided to visit my parents at their house and do my run on their treadmill. I ended up seeing stars and blacking out right in the middle of it. Crashed into a table. Needless to say, that was my last run. My doctor would later tell me that my heart rate reached around 350 during that last episode.
I was sent to an electrophysiologist, a surgeon that treats the electrical activities and arrhythmias of the heart. I got a call from my cardiologist a couple of days later. My two doctors had thought it was best that I have an MRI the next day. He stressed that I not do any form of exercise before then. They wanted to check for a very serious disease. He said that it is very rare, therefore he doubted that I had it, but they just wanted to rule it out. The next day I had the MRI and my doc called me two hours after the procedure and told me that I did in fact have the rare disease – Arrythmogenic Right Ventricular Dysplasia. Basically, my right ventricle is turning to scar tissue and cardio exercise makes it progress.
Strings were pulled to get me into Johns Hopkins the following week. I flew home to have a defibrillator implanted before the week was over. As devastating as this diagnosis was, I was told many times by different doctors and staff how lucky I was to be alive. They said that because my heart muscle was so strong from being healthy and an endurance athlete, I survived all those months while my heart struggled to beat correctly with the growing scar tissue. Around 80% of people that have ARVD die suddenly during exercise before ever experiencing symptoms. I had symptoms for nine months and by the grace of God had time to go from doctor to doctor until I had answers.
My special, wonderful friendship with Mary Leah has been priceless to me over the last year and a half. Especially in the beginning, when my cousin introduced her to me as a fellow heart patient. She swooped into my life like an angel at the right time. From day one, she offered to walk this journey with me. She took off of work and sat through the long surgery after only meeting me days before. Talking whenever I needed advice, just being her awesome, positive self. She has hinted and asked several times that I share my story on her blog. This month – national women’s heart disease awareness month – I truly realized that because I was given a miracle it is my duty as a survivor to share my story. To share it so that others can not only learn about what symptoms to look for, but to reiterate to everyone that when something feels really “off” and you have been told you are fine by doctors, be your own advocate and get to the bottom of it. It could literally save your life. Heart disease is the number one killer of women. Although my disease wasn’t brought on by an unhealthy lifestyle, so much heart disease can be prevented by good diet and exercise. Take care of yourselves! Know your numbers and your family history. Education is key in helping heart disease statistics drop!
****How gorgeous is Whitney!