We believe that by creating your hive and building connections, you will gain invaluable insight and support, too.
Tell us about your life before SCAD.
Active, completely carefree, and healthy. I ran my own business. I had just celebrated my 49th birthday two weeks prior. I ran marathons and trained all the time. I also boxed and loved riding horses. In fact, I was at a horse-riding camp when my SCAD occurrence happened.
What were you doing when your SCAD occurrence happened?
I was in Colorado attending a Buck Brannaman workshop (the Buck that trained Robert Redford and other actors starring in roles that required riding and knowing horses). It was a workshop to teach us how horses think and communicate to help them accept us to work confidently and responsibly with them. Horses are extremely vigilant and aware of their surroundings. They can sense our fear, stress, or indecision.
At the time, I was also training for a marathon in my home state of Texas, and on the last morning of the workshop, I decided to do a 16-mile training run in the cooler weather of Colorado. By early afternoon I was driving to the airport to head back home. It was during this drive that I started feeling very off.
What did the SCAD occurrence feel like? How did it manifest itself?
I had blurred vision (I thought it was a migraine) and pulled over but the blurry vision got worse. I started sweating profusely, I became nauseous and clammy, my arms started to radiate pain, and my jaw locked down. Suddenly, it felt as though a hippopotamus sat on my chest. I talked myself out of calling 911. It couldn’t be a heart attack, I thought, I had just easily run 16 miles! I was afraid a paramedic would tell me I had a panic attack and I feared the cost. I waited 45 minutes until the pain alleviated enough for me to continue driving.
Once at the airport, I called my sister, a panic attack sufferer, but she insisted that I don’t panic like that and should go to the hospital immediately. I did not listen to her. It happened again as I was going through security but did not ask for help. My friend, who picked me up from the airport, immediately noticed I did not look well and suggested taking me to the E.R., but I refused. A week went by, I continued to train and box and work out with my trainer. I told him what happened, and he told me I should go to the doctor. Again, I refused. Finally, a few days later when I was in bed, I had another attack, the hippopotamus paid another visit. I took some aspirin and went back to bed. The following morning, I called my internist (who was new to me) and visited her that day.
How were you diagnosed?
The doctor recommended doing an EKG and a nuclear stress test. After the test, there was a group of doctors waiting for me. At that moment, everything started happening very fast. My ejection fraction (EF) was 14%, meaning, my heart was barely beating. A normal EF is 55% to 75%. The cardiologist sat me down and said they were calling an ambulance to take me to St. Luke’s hospital. I said I could drive myself. He then got down on his knees in front of me and said “Rebecca, you fail to see the gravity of the situation. I’m going to hook you up to the EKG, you’re going to lie down here and wait for the paramedics.”
Remarkably, this cardiologist saw the blockage near my heart and immediately realized I had a dissection. I would have to immediately undergo triple bypass surgery. All three arteries were shredded and blocked.
When did you learn you had SCAD?
Luckily for me, the cardiologist knew what a dissection looked like and diagnosed it right away. It took several days for me to be coherent enough to understand what had happened, to learn about SCAD, and to have some understanding of what the rest of my life would look like.
What was your treatment like?
My friend who is a cardiologist has helped me see the bright side. I wondered what would have happened if I had called the paramedics in Colorado, maybe my heart would be less damaged. However, he explained to me that it is incredibly difficult to detect SCAD and only cardiologists specifically trained in detecting it would know it was SCAD. A doctor not versed in SCAD could have killed me by trying to put in stents.
About a year and a half later, one of the three bypasses was leaking and had to be repaired with a stent. It was a tricky procedure and it took 3 attempts to make the stent the right size.
After some years, when I became more involved with my diagnosis and met Katherine Leon, the founder and Executive Director of the SCAD Alliance, I learned that I could have Fibromuscular dysplasia (FMD). I pushed for a coronary angiogram and discovered that I do indeed have it. I soon sought out an FMD specialist at Mt. Sinai. He confirmed my medications which included blood thinners and a daily asprin and suggested some more drug therapies to improve my EF. I undergo yearly testing via a specialized ultrasound to measure artery flow and look for and monitor existing aneurysms.
What is your life like today
Today, 8 years after my SCAD episode, I’m still active, but I do suffer from fatigue more and I am not as energetic. I take a little extra time to appreciate my surroundings and I have even made room for chocolate! I still love to box and stay active although I’m not pushing the same limits as I was before. I’m still tenacious, that has not changed!
What are some positives that have come out of your diagnosis?
I feel a tremendous sense of freedom to enjoy every moment that I have. I worry less about what comes tomorrow or ten years from now. I have made some incredible connections with women that are going through life with SCAD. We support each other.
What would you tell someone newly diagnosed with SCAD?
Connect, find other people that will understand your situation and add to it with their own experience. In addition, when we come together in numbers, we can be more influential in garnering the kind of research and testing SCAD still needs. Join support groups on Facebook or organize your own in your town as I did in Houston with a friend who also has SCAD. . Join and support the SCAD Alliance, www.scadalliance.org. Look on their website for a Facebook group to join.
Most importantly, don’t be shy about advocating for yourself. Keep all your records in one place, make doctors look at them, make them listen to you. Write down what you are feeling so you can recall your symptoms when you meet with a doctor. Receive the best care your insurance will allow.
And finally, live in the moment, have chocolate, and laugh a lot!