By Kelly DiMaggio
4 Jan

Always a Heart Warrior

Thursday, January 04, 2018

Almost six years ago I had my last cardiac catheterization—a procedure that lasted nine hours (yes, you read that right!) and almost resulted in my cardiology team at the University of Maryland having to flip the catheterization lab into a full blown OR for what would have been my fourth open heart surgery. Luckily, they were able to avoid that.

At the time, I had been dating my boyfriend (now husband) for just over two years. I was still so young and our relationship was long distance, as I was a few hours away at college. Like most young lovers, our relationship was tumultuous at times. I was focused on school and mature way beyond my years (I guess growing up missing half of your heart will do that to a kid) and Mike was working multiple jobs, had no interest in school, and had been living on his own since the moment he turned 18.

I was introverted, nerdy and responsible. He was living young, wild and free. Sometimes we wondered how such opposites could attract and if our relationship would even make it. Yet there was always the strongest, inexplicable connection between the two of us.

March 16, 2012, the day of my last procedure, was the day that my family and friends knew Mike was an absolute keeper. He didn't leave the waiting room once while I was on the table for nine straight hours. From day one, Mike has never let my heart defect, and all that comes with it, scare him off. If anything, he became more devoted, more passionate, and more motivated to make an impact in the CHD community. We just celebrated four years of marriage in October and I simply can't believe how time has flown.

Just about two years ago, Mike and I both committed to a much more heart-healthy lifestyle. We drastically overhauled our diets and began walking for 20-30 minutes multiple times a week. Mike also made the decision to go back to school and was accepted into a Diagnostic Medical Sonography program where he is specializing in ultrasound of the heart (he will be the one performing echocardiograms!). Everything has been falling into place.

A few weeks ago, Mike had minor surgery to remove a small tumor from his finger. Since the tumor was sitting on a nerve, they opted to put him under general anesthesia. Four hours later we were home and getting ready to watch Netflix when he suddenly lost consciousness.

The next 10-12 minutes were the most terrifying of my life as the 911 operator walked me through what to do until the paramedics arrived. After six hours in the ER, where they ruled out a seizure, stroke and heart attack, Mike was sent home. Yet we still had a gut feeling that something wasn't quite right. His surgeon wasn't comfortable with the severity of his reaction to anesthesia either and recommended he see a cardiologist.

Mike reached out to my cardiologist and was told that she is now only accepting ACHD patients. This in and of itself is remarkable and speaks to just how much the CHD community is advancing; her practice started as general cardiology and she is now one of the current practitioners in the country who is board certified in Adult Congenital Heart Disease. However, since she is so close with us both, she called Mike shortly thereafter and insisted he come see her the next day.

On January 12, we will be heading back to the cardiac catheterization lab at the University of Maryland. Yet this time, I won't be the one on the table, I won't be the patient… Mike will be. At his appointment it was discovered that he has had an undiagnosed CHD for the last 31 years. He has an atrial septal defect (ASD) with redundant tissue and an atrial aneurysm.

We are still in total shock.

As we in the CHD community know, just about 1 in every 100 babies is born each year with a CHD. The CHD community is certainly growing, but one of the most common things I hear is how so many ACHD patients have never met a fellow CHDer, how lonely they feel, and how hard it is to find others who understand. Before I got involved with ACHA, AHA and the support group that my cardiologist started for all of her ACHD patients, I definitely felt the exact same way.

Little did I know that I'd been in love with a fellow CHDer for the past eight years!

I don't know about you all, but I certainly believe in fate. I mean… what are the chances that my husband has a CHD?! All this time he's been such an integral member of the CHD community as a support figure—a loved one. He's dedicated his life to learning about the heart and advocating for not only the CHD community but the cardiac community as a whole.

Little did he know he was a warrior alongside of us the entire time. I think it is safe to say that Mike and I have each other's whole hearts. Each year more curveballs get thrown our way, and each year we perfect our swerving skills. We were put together for a reason. “In sickness and in health” just gained even more meaning in our marriage.

As we head into 2018, we are committed to improving our heart health even further and focusing on ways to make a greater impact in not only the CHD and ACHD community, but in the entire cardiac community. Mike will have his catheterization and then resume school. Slowly we will find a new normal.

I wish all of you a happy and healthy 2018! Don't ever stop advocating, educating and furthering the development of this community. After all, you just never know who might be affected.

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