Jamie Napolitano
Prior to January 2, 2009, heart disease was a constant presence in my life. When I was 3 months old, I was diagnosed with cardiomyopathy, and the physicians told my parents that I probably would not live past the age of two. Although this diagnosis was devastating for them to hear, they moved forward with high hopes and admirable perseverance.
I didn't really feel the effects of heart disease as a young child. Fortunately, my parents allowed me to live like a normal child . . . a normal child with a very large, weak heart. It wasn't until I was 19 years old and experienced a heart attack as a sophomore in college that heart disease became very real for me.
From that point on, it seemed that I just couldn't escape my life with a failing heart. I was told that I should never become pregnant, because my heart was barely capable of sustaining my life, and it certainly would not be able to beat for two. My medication regimine became more intense as the symptoms of heart disease took a toll on my physical and emotional well-being. After countless tests, procedures, and three different defibrillators, I was exhausted.
Although the picture of my physical health was less than desirable, I experienced many miracles during my journey. I had the opportunity to work as a Child Life Specialist with children in a hospital setting and help them cope with the overwhelming stress of medical care. I had already lived well past my original prognosis, so I wanted to offer hope to families and children dealing with the same burdens that accompany chronic illness.
I also met my husband on an airplane on the way home from a girls' trip to Vegas! Winner, winner! We dated long distance for a couple of years before I made the move to Louisiana. In the first two years of our engagement and then marriage, I had an angiogram, an ablation, a new defibrillator, 3 shocks from my old defibrillator, and countless trips to the doctor, emergency room, and in-patient stays. The miracle was not how we met, but how he loved and supported me as I slipped further into heart failure.
Our next miracle came after we weathered Hurricane Katrina. We were hopeful that we would be able to start a family through adoption, but we knew that my medical history could be an obstacle. That is when my little sister offered to carry a child for us. My heart almost burst with joy when we discovered that she was carrying twins!
The life of a new mother of twins was exhilarating and exhausting. I thought that my fatigue, nausea, and overall lack of energy were associated with the role I played as mommy and wife with a full-time job, but my Cardiologist had a different perspective. My heart was functioning at about 20%, and there was nothing else that could be done to improve my heart function. It was time for me to be put on the list for a new heart.
I was so overwhelmed with the hospitalizations and with the way my symptoms changed my quality of life. I couldn't lay down at night to sleep, because of the cough caused by fluid building up in my lungs. I couldn't vacuum, walk for an extended period of time, and I couldn't even carry my own children without being out of breath. It was time, and I hoped it happened soon. I didn't know how much longer my body could endure the quick deterioration that I was experiencing.
I was in the hospital on January 1, 2009 when I got the call. I was nervous and hopeful at the same time. We all knew in that moment that this was hope for us, but it meant loss for someone else. I don't think I could ever describe in words the enormity of the moment when the time came.
My husband, mom, and dad brought my babies up to give me hugs and kisses and say goodbye. They were so sweet with their freshly washed hair and footie pajamas. They had just turned two, and I hoped and prayed that I would be around for their third birthday.
When I rolled into the operating room, I knew life would never be the same. I was going to be going home, regardless of the outcome. I let one tear fall before I went to sleep, and I was grateful for my second chance.
I opened my eyes approximately 7 hours later, and I knew that it worked! It took less than a week for me to recognize that I had a strong, healthy heart, and I was never going to be the same! You see, I never knew what a healthy heart felt like. At one point, I called the nurse in my room with concerns that I may have a fever, and she diligently checked my vitals, temperature, tubes. She asked again why I thought I had fever, because everything looked fine, and I explained that my ears and head felt warm. She smiled and said, "That is because you have circulation now. Your new heart is doing its job.” Wow! I'm glad I never knew all the amazing things I was missing!
Since the transplant, I have completed cardiac rehab and started running and regular exercise. I will run in my second ½ marathon in March, and my energy seems endless! My babies are now 6 and in Kindergarten, and I was there for their first day of school. I wasn't sure that would happen just four years ago.
I teach for Southeastern Louisiana University and in the St. Charles Parish School System, and I am able to be actively involved in my church's children's ministries, as well as volunteer for amazing organizations like Donate Life Louisiana and the American Heart Association. These things would not be possible without the gift of organ donation, and I am forever grateful. I live my life to the fullest, because I will not let this second chance be in vain. I try to live every day intentionally and enjoy the beauty in just watching my children play. However, I am no longer just a bystander in my own life due to heart disease, I live out loud!
Organ donation offers life to more than just the organ recipients. My family, friends, neighbors, coworkers, church family, and many more have been touched by the gift of life through my new heart. We are grateful that my donor, my hero, said yes to the gift of life.