My Doernbecher Story

Ashley's Story

"I like to think of myself as a positive person. I try to find the best out of the toughest situations. Life sometimes hands you situations that you may not be ready for. That's when you take what you have been given and make the best of it."

Born with Tetralogy of Fallot (a congenital heart defect), I was what doctors call a ,"Blue baby." Because my blood wasn't receiving enough oxygen from my heart condition, my skin was blue up until my open heart surgery at 8 months old.
(at Doernbecher Children's Hospital)

My whole life I have been very healthy. In fact, most of my childhood and throughout my life, I have kind of forgotten about my heart condition. I was always so active, a dancer for almost 15 years, a cheerleader in high school ... if you were to look at me, you would not think I have a type of CHD. It seemed the only time I was reminded of my heart condition, was when I would have my heart check ups. Throughout my life I have had my yearly cardiology check ups. I would always leave with the same information from my cardiologists, "You look great, you are healthy, come back in a year, see you then!"

The end of December 2009, I had my first child. She was born perfectly healthy. My pregnancy was very well, I did have to go to a high risk doctor throughout my pregnancy, but other than that, everything went very well!

In August of 2010, I had my yearly cardiology appointment. As I was getting ready to hear the same information, "You look great, come back in a year!" ... I was shocked when I didn't. My doctor looked at me and said, "So, I think I am going to send you up to OHSU for a cardiac MRI." I just looked at him, kind of clueless as to why he was saying this. As he explained that there were signs leading to what he believed a second open surgery for me, I just started crying. He was recommending the MRI so that he could get a second opinion from the doctors at OHSU.

In November of 2010, I headed up to OHSU ... with an open mind, scared, nervous, but ready to find out what the doctors were going to say. The day after my MRI, I met with a team of cardiologists. As I waited in the room with my husband, my mom and my baby girl ... we just kind of all had blank stares. Not knowing what would be said. As the cardiologists entered the room, they started talking about my MRI, what they saw ... and then they said, "So we agree with your cardiologist, it's time for a second open heart surgery." I said, "Ok, when?" Thinking they would say, oh a year or two. Instead they just looked at me and said, "Within the next 3 to 6 months." I kind of just sat there for a second followed by a breakdown of tears. I looked at my mom, I looked at my husband, both with surprised looks on their face. We were all so surprised!

As we left the office, we were all kind of quiet. But we stayed positive, hoping for the best.

Just this past February 9th, 2011, I had my second open heart surgery. My surgery was for a pulmonary valve replacement. What an experience it was to have surgery. What a journey it has been.

After 6 days in the hospital (after my surgery) I was released and sent home. According to my cardiologists, my heart looks great now. I will have to have another surgery at some point in my life ... not for another 10 or 20 years ... so until then, I am just living each day to the fullest!!

Five months after my surgery, my husband and I got married. July 2, 2011 was our wedding day, a perfect beautiful day. Every wedding has so much meaning behind it, but I think our special day meant so much more to us because of everything we had just been through.

This year I turned 27 years old. I am currently a stay at home mom, and recently have started a chapter through the "It's My Heart" Non-Profit Organization, within the area I live. The chapter is called the Souther Oregon Chapter. Through the organization, I do everything I can to raise awareness for those with heart defects.

My recent open heart surgery has really changed so much in my life. From the way I live everyday, to the way I think.
I do ALL that I can to spread awareness for those that suffer from Congenital Heart Defects, like myself.

This is my story, and I am so thankful to be here to share it. As having surgery was one of the hardest times of my life, it was one of the best experiences for me. At OHSU, you feel like you are at home. The doctors and nurses are just amazing. I can't thank OHSU and their staff enough for getting me through my surgery.

Today I am so thankful, I am inspired, and I am healthy!

Love to you all,

Ashley Drury-Guglielmetti

 

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Comments (1)

Cindy

Your story is inspiring and your video is beautiful. I too was born with a heart defect that resulted in surgery (they went through my back though) and now have recently been diagnosed with residual defects. I am facing open heart surgery and your story gives me hope.

Posted Sep 11 2013 09:06:18:437PM