In December of 1993, at the age of 15, I became ill during my winter break. My symptoms included flu-like stomach issues, red, bloodshot eyes, swollen lymph nodes in my neck, and dry, cracked lips. After three trips to the pediatrician over the course of 10 days, I was admitted to the emergency room for re-hydration via IV.
While there, I started to feel worse. I began throwing up and they performed blood tests, chest x-rays, and a spinal tap to rule out meningitis. All of the tests came back negative. I was admitted to the hospital and placed in isolation. My pediatrician went home and poured over his medical books until he found what he felt was a proper diagnosis for me – Kawasaki Disease.
He contacted a doctor at a larger hospital about an hour away and they agreed to admit me. I was brought down via ambulance, and started treatment with IVIG. Within 24 hours, I felt better. After a few days, I had a routine echocardiogram, which revealed that I had developed coronary aneurysms. I then had a cardiac catherization and it was determined that I had multiple, “giant” sized (8mm – 13mm) aneurysms on my left and right coronary arteries.
I was placed on Coumadin, a blood thinner. After two weeks, I was released from the hospital and returned to my school, as well as participated in sports with the encouragement of my cardiologist. I entered college in 1995, where one morning, about a year and a half into my college career, I awoke at 5am with arm pain on my right side only. The pain would not subside, so I called my cardiologist, who directed me to the ER for an EKG.
Additionally, an enzyme test was performed and it was determined I’d suffered a small heart attack. I was 19 years old. My cardiologist informed me that my Coumadin levels (INR) had been too low and I’d formed a clot in one of the aneurysms. A few months later, I awoke with arm pain in both arms, went to the ER and had the same results via enzyme test – a second, albeit minor, heart attack. Despite the heart attacks, I was continually encouraged by my doctors to maintain a healthy lifestyle with eating right and exercising.
Since 1997, I had occasional episodes of angina, but had no heart attacks. I had annual stress tests, echocardiograms, EKG’s and took Coumadin. I also had cardiac catherizations every three years to check on the aneurysms, which showed no change. I maintained a healthy lifestyle, got married, moved from Maine, to Florida, to Washington state, which is where I live currently.
In July of 2009, after a year’s worth of consultation with a perinatologist specializing in women with heart conditions, I became pregnant. I spent 9 months giving myself Heparin injections, and my pregnancy progressed normally and
without complication. On March 15, 2010, my husband and I welcomed our beautiful son Santiago to the world via c-section.
Having been on blood thinners prior to the surgery created some complication, and I developed a hematoma beneath my skin that required a second, exploratory surgery to remove it. After an 8 week resting period once I returned home, I began working out four to five days a week and started training for a 10k road race.
Unfortunately, on August 20, 2010, I suffered another small heart attack and endured my fifth cardiac catherization, which showed no change in aneurysm size. Again, my heart showed no damage, and since then, I’ve maintained my exercise routine with my doctor’s blessing.
I am currently 33 years old, and plan to continue maintaining my active lifestyle, and my husband and I are hoping to add to our family in the coming year. I consider myself to be very lucky – I have a wonderful husband, and a beautiful 1 year old son, who continues to amaze us every day. I try to maintain a positive outlook about life, without making light of my situation.
If you would like more information about Kawasaki Disease, please visit the Kawasaki Disease Foundation.
