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Why I Share About My Life After My Heart-Lung Transplant

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My story begins over 37 years ago, soon after New Year’s 1980. Though I was due to be born in mid-March, I decided to enter the world much earlier than expected, and was born at 29 weeks and 2 days gestation, weighing a tiny 2 pounds, 3 ounces at birth.

Because of my early arrival, I was born with a multitude of health problems, primarily in my respiratory system. While it was obvious my lungs were severely underdeveloped, it didn’t even occur to my doctors that there might be something wrong with my heart, too.

I was diagnosed with Eisenmenger syndrome at the age of 2 and a half years old, and my parents were told that if I lived long enough, I might be able to receive this operation that was still in its infancy stages. An operation that could repair or even replace my damaged heart and lungs. An operation called a heart-lung transplant.

Because of my poor health, and the fact that the winters in Boston were so hard on me, my family and I (now with a younger sister who was full-term and healthy) moved to sunny Florida when I was almost 5 years old, in hopes that it would slow down the deterioration of my health. It did.

Because of the timing of our move, I ended up having a great childhood with my two younger sisters. I learned how to beat Super Mario Bros. in my Nintendo, made the honor roll, grew up in a wonderful neighborhood with many kids my age, was active in the Girl Scouts and in my church, got into mischief, and wanted DJ Tanner, from the show “Full House,” to be my big sister!

At the age of 14, it was discovered that we needed to get moving with the transplant. After evaluation at the children’s hospital, I was put on the list and ended up waiting for almost 18 months. Thankfully, the first call was the real thing and my body accepted the organs almost instantly.

While I’ve had the occasional ups and downs, my transplant has been (for the most part) a success since the very beginning (a rarity, I know).

Since then, I’ve been able to accomplish many things: I wouldn’t have been able to graduate high school for one thing! Also, I’ve become a full-time employee within the state government and work for nearly 13 years!

I’ve also been able to welcome numerous cousins into this world and dance (dance!) at family and friends’ weddings. The latter I couldn’t do in the months and even years leading up to my transplant.

I’ve been able to become a “mom” to my four-legged fur-baby, Missy. I’m able to walk her, play with her, cuddle — things I would’ve never been able to do with a pet before my transplant.

Last, but certainly not least, I’ve been a dynamic member within the transplant community — both online and face-to-face for over two decades. I am able to offer advice and insight into the post-transplant world, and I don’t pull any punches on what lies ahead. Since 2002, I’ve been an active participant at the Donate Life Transplant Games of America, an event that is near and dear to my heart (and lungs!), proudly representing Team Florida.

Through the transplant games, I’ve been able to connect with my fellow recipient, exchange stories, learn from our experiences, thank donor families and meet living donors.

While at the games, and surrounded by my “transplant family,” I’m reminded tenfold why I need to share my story, to educate people about the desperate need for more organ donors and be physical proof for as long as I can, that transplantation really can work.

A version of this post originally appeared on TransplantLiving.com.

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Thinkstock image by BrianAJackson

Originally published: April 18, 2017
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