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Living Courageously with Congenital Heart Disease

Meet Jessica - a MedicAlert member for 15 years, living courageously with congenital heart disease (CHD). On a daily basis, Jessica manages multiple heart defects such as Tetralogy of Fallout (ToF), which is a cardiac anomaly that’s a combination of four related heart defects: ventricular septal defect (VSD), overriding aorta, pulmonary stenosis, and right ventricular hypertrophy. Along with ToF, Jessica also lives with mitral valve prolapse, double outlet right ventricle, and atrial septal defect (ASD).

Jessica’s long battle with CHD is a testament to the CHD warrior that she is! At the age of 13 months, Jessica went through two open heart surgeries. Spending over 9 weeks in the hospital, she was given only a 40% chance of survival. Jessica not only survived but thrived. But at age 12, she was diagnosed with Klippel Feil Syndrome (neck and spinal defects). While at a doctor’s appointment, Jessica went into heart failure and was rushed into emergency open heart surgery.

Eight and half years later, Jessica once again not only beat the odds, but crushed them!

Jessica survived that surgery as well, and today is stronger than ever. With everything she’s been through, she’s become committed to In her mission to raise awareness about CHD. Jessica is an advocate for people living with CHD, and wants others to know that they are not alone. Jessica has an active blog and designs t- shirts and other products to help her raise awareness. Recently, we had the privilege of having an in-depth conversation about CHD, MedicAlert and COVID-19.

How does CHD impact your daily life?

CHD impacts me daily, but it also pushes me to go farther and to stay strong. Sometimes that’s a hard thing, because I have been through three heart surgeries. But I make it a point to not stress over the small stuff, so the little things won’t stop me. The daily activities I enjoy do need more thought - such as a bike ride –because I know at the end of the bike ride, I will be very tired. So, I have to think through certain activities - whether I want energy for the whole day or half.

There is also my diet, I have to manage my vitamin K because I take a blood thinner. Too much vitamin K can put me at risk of a blood clot. And being on blood thinners also puts me at a higher risk, and more prone to nose bleeds and bruising. So, some days it’s a lot!

I also mange PSTD from the trauma of heart failure that I battle daily. When my heart skips a beat, I often have concerns that I will experience heart failure, it is scary! But when my heartbeat regulates, I get a sense of calm that washes over me. I do try to keep a mix of seriousness and humor in my life, because living with something that can be so limiting also inspires me to live a full life.

I try to see a silver lining in everything. Like, I have a mechanical valve, you can actually hear it click in a quiet room (or if I run, it makes my heart beat fast). I think this is a huge gift. That tiny sound brings joy to others around me - they can hear what is keeping me alive!

My bovine valve is cool too; I like to tell people I am part cow – that always gets a laugh and keeps a little comedy in my life, because really, what’s life without a little laughter?! And some days, I know the Lord shows me that my greatest weakness is my greatest strength and light for others.

What does MedicAlert mean to you?

It means assurance. And if I can’t advocate for myself, or speak for myself, I always know that I am still safe. I like that my MedicAlert ID opens the doors for advocacy – so I can inform others of my health and how to help me in emergent situations.

Have you ever had a MedicAlert moment where an emergency responder identified and located your id?

Yes, I had one instance when a first responder identified my bracelet. I was in a car accident, but not injured. I still needed to be examined because of my Klippel Feil Syndrome. They noticed and read my bracelet then asked me about the engraving, which gave me the chance to explain further details with my health.

Do you wear your MedicAlert ID every day?

I wear my bracelet every single day. I only take it off if I need tests (at the hospital) a couple of times a year. I feel like something is missing when I don’t wear it, because I have worn it for over 15+ years!

Does your MedicAlert ID empower you to live your story?

Well, it opens the doors to conversations. I am often asked what it is. CHD isn't something that you can see on the outside. The bracelet identifies my condition. And that could be the reason why some people choose not to wear it, because they don't want to be different. But I don’t care.

A lot of people tell me how much they like my MedicAlert bracelet, even though it's just a simple piece of metal keeping me safe. To me, I see it as an opportunity to share my story, my testimony of how far the Lord has brought me.

Does your MedicAlert ID help you live your life the way you want to?

Absolutely! I find comfort in wearing it. I don't have as many "well if this happens how will people know about my heart?” moments or thoughts going through my head. It's comforting to wear my ID, to know that I'm safe.

Does having a MedicAlert ID give you a sense of comfort during the COVID19 pandemic?

It does. I know I am at high risk because of CHD. But I feel like if I need to go into town for something essential, I can show them I have this as my proof that I need to take extra caution with health and safety.

Is there one thing about MedicAlert that you absolutely could not live without?

Well, could I be comfortable without my MedicAlert ID? No, it is a huge blessing to know that I don't have to worry about informing others of my chronic medical condition, especially if I am in an emergency.

Connect, get inspired and follow Jessica on Facebook and Instagram,