We've partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month's column comes from a patient with spontaneous coronary artery dissection (SCAD).
This is a story about a betrayal of the heart -- an actual heart. Girl has heart, girl treats heart well, heart gets torn up and girl figures out how to recover from this betrayal by her own body.
Last summer, I participated in my second sprint triathlon. The first part was a half-mile swim in a cold lake. I'd been swimming this distance for months and had done this same triathlon before. Yet, I couldn't catch my breath, my chest hurt and swimming was appallingly hard for me. But I persevered and finished the biking and running events just fine.
Two weeks later, unnerved by my unsuccessful swim, I steeled myself for a similar swim across a lake in Idaho. Almost halfway through my swim, I started struggling to breathe and felt a band of pain and searing cold across my sternum. I felt weak and cold and couldn't swim anymore. Fortunately, my husband was on a paddleboard close by. I called him over, climbed on the board and hung onto his ankles for dear life (vomiting occasionally) as he paddled us to shore.
In retrospect, I had many of the typical symptoms women experience when having heart attack, but it took a while before it dawned on us that I was suffering from one. I don't fit the profile: I was 53, nearly vegetarian, slim, fit with a mild addiction to kale smoothies. However, I had just gone through menopause and was on a low dose of HRT.
Fortunately, the ER doctor in Idaho did an EKG and figured out I was having a heart attack. The next day, an angiogram found a tear in the innermost wall of my coronary artery called a spontaneous coronary artery dissection (SCAD). This tear causes blood to flow between the layers of the arterial wall, blocking blood flow and causing a heart attack. SCADs are rare, yet, nearly 80-90 percent of SCAD patients are women in their early 40s with no additional risk factors.
It's not yet known what causes SCADs. So, I am left with a lot of unanswered questions, and I've had to slowly rebuild trust in my own body and abilities, knowing my condition is rare and poorly understood.
At the beginning, I was pretty wobbly. I was participating in my care and learning all I could about SCADs, but I was traumatized by the event and from carrying the weight of this new reality. I looked like I was doing well, but inside, I hadn't reconciled with my new, fickle body.
Gradually, I started regaining trust in my body. With a little anxiety, and often with company, I resumed hiking, biking, warm-water swimming and skate skiing. I had an episode of ventricular tachycardia four months after my SCAD, so I was on a short leash for a long time. Yoga was an important part of my recovery because it allowed me to move and strengthen my body with exquisite moment-to-moment awareness of what my body was capable of doing.
One year later, I am doing about 90 percent of the physical activities I was able to do pre-SCAD. I've had incredible luck in this journey, and there's much I'm grateful for: a steady, kind husband who has helped me navigate some tough procedures and doctor's visits; sweet, caring children (our two sons are 20 and 17); amazing and generous friends and family; and a job I love that loves me back. I'm also thankful for access to scientific literature; good health insurance; connections in the medical community that led me to wonderful, collaborative doctors; and the ability to be assertive and courageous when I ran up against a non-collaborative or rigid care provider.
I have joined the board of SCAD Alliance and am working on a survey for SCAD survivors to help us understand how we can best address the psychosocial needs of this population. As a psychologist, this aspect of SCAD survivors' experience is particularly intriguing and important to me. I hope our work will help survivors, care providers and family members understand what resources and skills SCAD patients need to survive, and survive well with happiness, resilience and courage.
The knowledge that I had a heart attack is never far from my mind. I no longer operate with the same unshakable confidence -- thinking if I treat my body and heart well it can endure any challenge. Now, I treat my heart well, but the thought that it could betray me again has settled into my bones. I've learned to carry this with me and I hope that this has propelled me forward much more than it has held me back.
Dr. Tina Pittman Wagers is a mom, wife, lifelong athlete and a clinical psychologist. She is on the faculty of CU Boulder's Department of Psychology and Neuroscience. She is a board member the nonprofit organization SCAD Alliance and is conducting a detailed survey of SCAD survivors' psychosocial experiences. She'll be speaking at Stanford's Medicine X on Sept. 26.
Photo by Hayley Bouchard
