Name: Rebecca Smith-Casey
Age: 39 City, State: Lambertville, NJ
What’s your heart story? ( tell us your story in a format that works for you…include any of the following)
In 1993 when I was a sophomore in high school I was in the middle of field hockey summer sessions when I started having dizzy spells, tunnel vision, blackouts, and fainting. My parents took me to the doctor and they thought I had low blood sugar, which was ruled out. Thankfully my family doctor thought outside the box and ordered a Holter monitor, which showed an irregular heartbeat and I was diagnosed with a cardiac arrhythmia, supraventricular tachycardia (SVT). At the time I was 15 and when we consulted with the doctors they suggested there were few options based on my age, which included lifelong medication and a long list of things I was likely to never do (live alone, have kids, drive) or the possibility of an open heart surgery. Thankfully my cardiologist was willing to look for alternatives and suggested we see another cardiologist about a “new” experimental treatment, cardiac ablation. It was determined I’d be a good candidate for the procedure, where they mapped the electrical impulses in the heart tissue and used a radio-tipped catheter to burn away the problematic tissue. At the time I was the youngest person to undergo the procedure, which was about 85% successful in dealing with the SVT. I was told at the time that they did not want to be too aggressive in burning away tissue due to the location of some of it and the risk I could have a stroke or need a pacemaker.
I returned to high school about a week later but had a number of on-going issues that arose in the context of the surgery and SVT, with periods of ongoing arrhythmia, which meant I missed a lot of school my sophomore year and had to have tutors to stay on grade level. I wasn’t allowed to play sports anymore and was advised against caffeine, but otherwise, I felt like I went “back to normal.” I graduated high school on time, went to college and double majored in psychology and criminal justice, then went to law school and got a master’s in psychology, and started working full-time in a forensic psychology practice. In 2008 When I was 30 my friends talked me into signing up to do a breast cancer 3-day and in the midst of training, I had an episode of fainting and dizziness. When I saw my doctor they confirmed that the SVT had returned. I had all the cardiac tests again and they confirmed the need for a second ablation, which was done in 2009 with about 98% success. Since then I’ve had occasional periods of palpitations but no real issues other than low blood pressure to deal with. I got married in 2010 and then in 2011 decided to go back to school to do my doctorate in psychology, which I completed in 2016. In 2014 I gave birth to a beautiful little boy, Finn. After the 2nd heart surgery I decided the universe was signaling to me that if I was going to volunteer for a health issue I needed to get involved with AHA, which I did, serving as a survivor ambassador, a spokesperson, and getting involved in the Government Relations Committee for which I ‘m the co-chair in NJ. I have gone to DC three times to lobby for issues around heart disease, as well as doing work on the state level related to health and heart legislation.
What would you say has been your lowest point or biggest fear about your condition?
I think my biggest fear for a long time was the risk of needing a pacemaker or a defibrillator but then when I learned I was pregnant my biggest fear was that he would be born with a congenital heart defect. I can remember the sense of relief I had at every ultrasound when his heartbeat was clear and fine. Since then my fear remains that he will have some sort of heart condition, but to date, he’s healthy as can be.
How do you keep yourself motivated during the difficult times?
I can remember when I was 15 and they told me the list of all the things I’d never be able to do I looked at that list and thought “challenge accepted.” A lot of the research on children and adolescents who have heart disease suggests that they tend to be lower achieving than their peers. I took that as a personal challenge, a motivator to keep going, keep achieving, and keep proving that nothing would hold me back.
Why is sharing your heart story with other women important to you?
I think that women often forget to take care of themselves. We so often get caught up in taking care of other people that we forget to take care of ourselves, to recharge our own batteries, and to take the time to take care of us. The fact that heart disease is the Number One cause of death among women is no surprise for that reason – we put taking care of ourselves so far on the back burner. But also, so many teenagers with SVT are misdiagnosed with anxiety and don’t get the treatment they need. I can remember being sent to the ER by my doctor with an episode of SVT and being accused by one nurse of having used drugs and having a doctor suggest that I was having a panic attack until my cardiologist came down to the ER to say I should be admitted. I think that sharing my story is a way to hopefully help women stop and pause to take a moment to take care of themselves, or to be aware of the possibility that what is being dismissed as anxiety in a teenage daughter may actually be something else.
What advice do you have for other women living with heart disease?
I think my best advice is to find a way to take care of yourself. Don’t let yourself stagnate – use heart disease as a motivator for healthy eating, exercise, hobbies, volunteer work, education. We can do nearly everything we want to do – living with heart disease for me means LIVING first.
Many people are not aware that heart disease is the number 1 killer of women in the US, why do you think that is?
I think other diseases get more attention – they seem sexier, so many people assume that breast cancer is what the No. 1 killer is. Plus I think women put themselves last in line in taking care of themselves. Besides the fact that women and men have different presentations of heart disease, so when a woman has a heart attack and it isn’t that classic presentation that is seen in a man they ignore it because “that’s not a heart attack.”
What do you think you (or we) can do to raise awareness about women and heart disease?
Right now I do my best to use my voice to encourage women to do little things like learning their numbers, get a yearly physical, and maybe as a psychologist most importantly to engage in self-care. Learn mindfulness, take a walk, pick up a hobby, leave the dishes for the morning, and take time to relax for yourself.
What has living with heart disease taught you?
Honestly, it’s taught me that there are ways to get around limitations if you are willing to put yourself out there to go outside that box. I’ve learned that I can see the challenge and help myself overcome it, or I can put myself back in the box and allow myself to miss out on things I want to do. I also have really learned to take things in stride – things that seem devastating at first can be overcome. I think I look at my own mortality in a different way than I might have if I’d never had a heart condition. It allows me to recognize that there are times when we should seize the day and be spontaneous and other times when there is comfort in planning for the future because I have certainty that there will be a future to plan for.
What are you thankful for?
Advances in modern medicine, my son, sunny days
As a heart disease survivor, you try to live a healthy lifestyle but you are human so what’s your guilty pleasure?
Red Velvet Cake
What do you like to do for fun?
I love to travel, spend time at the beach, and read. I love to do projects or cook with my son and we’ve recently adopted a rescue puppy, so watching her and my son figure out the world can be really fun and funny.