Living with a Diagnosis

For the past few years, I have been looking for an organization where I feel I could truly make a difference.  Where I could share my story to inspire and help other people. The thing I love about Tigerlily is we all have stories to share, and by sharing our stories we help make each other stronger and motivate each other on our personal journeys. I, like many of the women with Tigerlily, live with a diagnosis everyday that has presented it’s own unique set of challenges and  shaped my life.

I received the diagnosis of congenital heart disease when I was 7 days old. I had major open heart surgery at 9 months old. When I was 4, the doctors realized there was  a problem, and open heart surgery was required again. All my surgeries were in the 1970’s, when medicine was much more raw, and not as refined as it is today. Growing up, I visited the pediatric cardiologist often and was told although my surgeries were holding up good, I had an uncertain future. I could need a heart transplant, I might not have children, and we just didn’t know what the future held.

Despite this diagnosis there was something deep down inside of me that told me I had to keep going. As much as I lived in fear of what the future might hold, I knew I could still have a bright future. The one thing I always kept in mind was I may have heart disease, but it doesn’t have me.  I went on to marry a man who loved me despite the scars on my chest, back, stomach and wrists from surgery. I went on to have three beautiful children.  I attended college, then graduate school and earned three college degrees, two bachelor’s and a master’s degrees. There were times when life was 10 times harder, the road filled with a few more hurdles, but I was determined not to let the diagnosis of “heart disease” shape who I was.

I have a scar that runs down my chest that looks like a zipper. I explain to my children how when I was very little the doctors unzipped me, fixed my heart, and zipped me back up. I take my heart medication every day, as I will the rest of my life. I live a healthy lifestyle, and am determined to make it to the gym more.  Last year my cardiologist said the most beautiful words I had ever heard. I had extensive testing on my heart done. He told me he came in expecting for the worse, but was surprised to see my heart looked almost “normal”. As we all know when a doctor says the word “normal”, it is the most beautiful word in the world.

The important thing I want to share with people, is to never let your diagnosis define who you are. You can do anything in this world despite the circumstance or diagnosis you have received. The road ahead may be filled with uncertainties, but it is important to always keep reaching for your dreams, and know your future can be bright and beautiful.

Paige Migliozzi, RN, MSN, CNOR
Community Relations Manager