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Janie Cox’s Story

Congenital Heart Disease Survivor, Age 28, Williston, ND

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Janie's Story

The summer I was 17 I was only concerned with the usual 17 year old girl worries, and looking forward to starting a new season of volleyball. When the doctor wouldn’t clear me on my routine physical because he thought he might have heard a heart murmur, I was more annoyed than anything. Not being cleared sent me to my family doctor, who also thought he might hear a slight murmur, nothing to worry about, but the next step was seeing a cardiologist. After going through some tests, I had to miss most of the first day of school to finally meet with the cardiologist. This is when my experience went from annoying to life changing. On the first day of my junior year of high school I was diagnosed with a rare, congenital heart defect called Ebstein’s Anomaly. I was told by our small town doctors that the experts were at Mayo Clinic @ Rochester, and they were sending me there ASAP. During my visit to Mayo it was concluded that although I had what they classified as severe Ebstein’s Anomaly, the leaking that was happening was only considered moderate. In simple terms, they could never completely repair my heart, until it was so bad that they had to do surgery, they would not. It was concluded that I would see my cardiologist once a year for tests, and each year they would consult with the specialist at Mayo. Ebstein’s Anomaly is a deformation of the tricuspid valve. The valve had spent 17 years trying to compensate, causing the right side of my heart to enlarge. I also had small hole between the two chambers, and moderate regurgitation. The doctors were amazed that I had been so asymptomatic, and that nobody had yet to detect it. At the time of my first trip to Mayo they would have replaced my valve with a pig’s valve, or a mechanical valve. These valves usually have an expiration date, causing you to have to replace them every 10-15 years. This is where the huge blessing in disguise comes in. Years went by, I went to college, got married, got my first teaching job, and life was good. When I was 24 I went to my annual cardiologist appointment and was told there had been enough change to cause another visit to Mayo. When you visit Mayo from afar, they schedule surgery for the day after your appointments, so you can stay and get it done. I created sub plans for 6 weeks, and we took off. After a couple of days of testing, it was concluded that it was in fact time for repairs, but plans had changed. In the years since my first visit, the experts at Mayo had discovered a new technique to fix the tricuspid valve, rather than having to replace it. The blessing is that if the surgery was successful, I would never have to have surgery again! I underwent surgery, repairing the valve, bringing my heart down to size, and patching the hole. It has been 3 years, and I feel great. Almost one year ago now, I had been given the all clear to have a baby. I knew I would be considered a high-risk pregnancy, but the doctors felt that with monitoring, everything should be fine. I gave birth to Reese, our little girl, 3 weeks ago. Because of my heart history we had a fetal echo-cardiogram done around 20 weeks, I opted out of all the genetic testing mostly because this was the only test I was concerned about. I fought back tears when the doctor told me she had a, “text book” heart! She is perfect in every way, and my health is great as well. We are so blessed, and I can’t believe the huge blessing in disguise it was to have not have had surgery when I was first diagnosed. I have participated in Go Red events for years, but it was my daughter that finally inspired me to share my story. I feel that it teaches women that even a routine physical can save a life, and this scar on my chest reminds me every day that I am here for a reason.

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Janie is interested in giving support to other women with heart disease. Contact her if you'd like to receive support.

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