A HEART STORY:
By Cindy Moore
About My Condition and Treatment:
At the age of 32, I was diagnosed with an endothelial dysfunction, which causes coronary vasospasms. Essentially, the layer in everyone’s veins that produces nitrous oxide (which keeps your veins open for blood flow) decided to go on vacation in me. And...I kinda need that blood flow to live. The restricted flow can create atrial fibrillation, ventricular fibrillation and ventricular tachycardia. I have experienced all of these “heart episodes” as a result of my dysfunction.
Leading up to my first “heart attack,” during the days, sometimes I would feel dizzy and lightheaded. Sometimes I had the sensation of my heart racing, breathlessness, and chest ache. The sensations passed and I moved on with my day. Nights had also been rough. I woke in pain some evenings. Dreams of being choked, sometimes getting stabbed, would fling me awake, panicked and disoriented. A pressure weighed on my chest with the strength of elephants. Heat rushed through me, spidery and made of fire. In the moment, I struggled past the confusion, grappling back to “normal.” “Normal” returned after a few minutes. Exhausted, I pushed the confusion aside and fell back to sleep (read more about women's symptoms of a heart attack here).
Like many, I was distracted. I had responsibilities, work, and bills. There were reports to complete, laundry to wash, and the TV shows to catch up on. I told myself the things people tell themselves as they move to the next distraction: I’d deal with my health later.
When I woke the night/morning of my “heart attack,” I figured the pain would pass again. Wrong. The pain got worse, coming in waves, receding and returning with greater fury. Nausea rushed my core and I stumbled to the bathroom. Sick and gasping for breath, the pain exploded as red and black starbursts through my vision. I was hot, so hot, like my skin was made of fire. I passed out somewhere in the dark of the bathroom between trying to breathe, vomit and…breathe.
In summary, between January 2014 and June 2014, I’ve experienced at least 6 “heart episodes,” 7 visits to St. Luke’s ER, 2 ambulance and three helicopter rides to the Mayo Clinic in Rochester, MN. After a particularly massive heart attack, I underwent a “freezing machine” (can’t remember the name of the machine) procedure to limit damage to my heart and brain. After I came out from my induced coma, I had to relearn to walk and eat solids. Not fun. I also had a double sympathectomy surgery (twice, first procedure was aborted due to breathing difficulties) in hopes to restrict the nerve pulses that could be attributing to the vasospasms.
I underwent three surgeries to place a pacemaker/ICD (two for each lead and one to fix a slipped lead that caused pericarditis). The pacemaker aided the work of my heart and the defibrillator was to provide a more immediate aid should all else fail. Additionally, doctors tested various combinations of medications to control my vasospasms. Pills and dosage would change with each hospital visit as we sought to find an effective combination to stabilize my condition. A special “care plan” was put in place to coordinate efforts between ambulance and hospital staff where a planned response would be executed when I arrived in emergency state. Since June 2014, my condition has appeared to stabilize while my doctors try to lower/reduce the amount of medications I take.
Favorite Doctor/Care Providers and Why:
Nurse Practitioners Sheri Bosch, Jessi Collum and Randi Key were amazing. During all the emotional turmoil and confusion, they listened and sought to help me understand what was happening, assuring I was comfortable and didn’t feel alone. While the pills changed and the needles poked, they also helped keep my family informed and welcomed them into my healing journey. Most all of my day/night nurses were wonderful as well. I was especially touched by the cardiac care offered by Natalie, Kylie, and Kelsey who each went above and beyond to make a difficult time a little easier with their kindness and concern.
How has life changed?
I will admit I’ve always been a bit of a flake and a bad procrastinator so changes have been rough. These days life is pretty much about pills and planning. I have to preplan my pills for the morning, afternoon, and night at least a week ahead and assure I reorder my prescriptions in time. I have to always be near my nitro pills should I suddenly have an episode onset. I have to plan ahead even for the smallest travel plans. I can’t leave home without my pill, can’t crash the night at someone’s house without my pills, can’t vacation without pills. I have learned to recognize red flags from my body and to ask for and accept help. I also have started to recognize and accept my physical limits.
Words of wisdom?
Pay attention to your body and be proactive with any concern. I was 32, physically active and tried to maintain a healthy diet. When my body threw red flags, I ignored them, part distracted, part in disbelief. Pay attention to your body. Life gets busy. Responsibilities, chores and duties can get in the way of intentions, but your health doesn’t care about intentions.
Endothelial Dysfunction with Diffused Coronary Vasospasm (causing multiple episode of “heart attacks”), Pericarditis (as a result of a slipped pacemaker lead)
Cardiologist: Dr. Ersin Atay, UnityPoint Clinic Cardiology
Other Care Providers: Dr. Paramesh Ramadugu (Internist), Coordinated efforts with doctors (Dr. Amir Lerman, Dr. Michael Osborn, Dr. Michelina) at Mayo Clinic in Rochester
Double Sympathectomy, ICD/Pacemaker placement (Mayo Clinic), “Hypothermia freezing machine”
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