May 16
katie091 , Posted on SUPPORT NETWORK Blog

My Truth: Truncus Arteriosus

“I’m alive, even though a part of me has died. You take my heart and breathe it back to life. I fall into Your arms open wide, when the hurt and The Healer collide” -Mercy Me

Less than 1 in 10,000 babies are born with the congenital heart defect called Truncus Arteriosus; this defect makes up 1% of all congenital heart defects. Truncus Arteriosus does not play favorites-it doesn’t matter if you are male or female, and the cause is simply a difference in chromosomes.

ccording to Boston Children’s Hospital, “Truncus arteriosus is a complex defect in which a single vessel (instead of the usual two separate arteries) arises from the heart. The normal embryonic heart starts with a single great artery, the truncus arteriosus, which normally divides into two–the aorta which pumps to the body, and the pulmonary artery which pumps to the lungs. Truncus arteriosus results when the single great vessel has fails to separate completely into the aorta and the pulmonary artery, and the truncus arteriosus pumps both to the body and to the lungs.”

I have Truncus Arteriosus and this is my truth.

When I was born, I appeared completely healthy. I had normal color and I had no visible breathing issues. In fact, I was the first female to be born within my dad’s blood line. From the very second I was conceived, I was against the odds. After the doctors took me away for the routine newborn examination, they discovered the difference in my heart. I cannot speak for what my parents must have felt at that time. Ten days after birth, I had my first open-heart surgery at Boston Children’s Hospital to repair my heart.

Fast forward to when I was four years old. My heart had outgrown the original conduit, and it was time for a replacement. I returned to Boston for my second open-heart surgery. I do have some memories about this time. I remember getting showered with gifts from my family, I remember the “silly juice” the doctors gave me before surgery, and I remember how much I hated the food at the hospital.

Despite having a heart defect, I grew up normal. As long as I felt good, I did not have any actual restrictions. Of course, my mom worried herself crazy when I went on a rollercoaster or complained of being tired during an activity. I was a typical girl who happened to go to the cardiologist every 6 months for an echocardiogram and EKG.

It wasn’t until I was twenty-one years old that I truly felt different from everyone else. I needed my third repair. There was a series of events had occurred between my doctor telling me it was time for a repair and actually returning to Boston Children’s Hospital. These events surrounded whether or not I could get away a repair done through a catheter. In my heart and in my mind, I knew what the final decision would be.  At the age of twenty-one, I had my third open-heart surgery.

Describing this time period as hard or difficult would be an extreme understatement. One doesn’t know what it feels like to lose all control until it actually happens. One major hardship (for a lack of better words) was when I had to sign a form that basically said if I were to die during surgery, then the hospital could not be sued. That sucked. A lot. On the day of surgery, I had to wait a lot longer than anticipated due to complications during the surgery prior to me. Thankfully, I had the comfort of about eight of my family members sitting with me and offering me their shoulder or hand. When it was time, tears and hugs were exchanged, and I was escorted to the pre-surgery room my parents and brother. The way I felt in that room cannot be explained. The way my family felt in that room cannot be explained. Those emotions are ones only our own hearts will ever know.

Life post-surgery was a rollercoaster. By the grace of God, I was discharged from the hospital in record time—only three days after my surgery. The initial physical pain was bad, but the duration of the pain was less than I expected. After six weeks of recovery, I was able to drive and return to work on light duty. Everything started to go back to normal. Then one day, roughly a couple months post-surgery, my mind caught up to me. I was angry, I was anxious, and I was, to put it simply, freaking out. It was so unexpected for me to feel that way. The doctors warned me that I may suffer from “shock” after, but my procedure and recovery went so well, that I never expected it. I can’t even describe or pinpoint how I felt, I just wasn’t emotionally okay.

After trying different coping mechanisms, I decided that I could not handle these feelings naturally, and I went on Zoloft. I was on that for about a year then I weaned myself off. I was generally good after that, aside from some strange memory triggers (for example, I still can’t stand being super thirsty, it takes me back to when I woke up from surgery). A couple years went by and I began to feel full of anxiety again. No rhyme or reason why it came on again, but it did.

I am now twenty-five years old and temporarily back on Zoloft, forever dealing with irrational anxiety. Going through open-heart surgery as a young adult changed my life. At that age you understand everything the doctors are saying, you understand everything the surgery entails, and you understand that when you go under anesthesia there is a chance you may not wake up. However, you also understand God’s mercy and grace, and you learn to live the best life you can.

I was not dealt an easy hand. I have had my share of troubling times, and I will have more. I also would never change this. Because of what I have been through, my faith is strong, I have received so much love, and I have witnesses God’s work, first hand. I am tremendously close with my family, I am healthy and strong, and I am blessed to be alive. This summer I get to have the wedding of my dreams and marry my best friend. I will get to have children one day. I will get to grow old with my husband.

I have Truncus Arteriosus and this is my truth.

  • BevPohlit
    You're a warrior! Wonderful story, and I'm happy to have read it. God bless you on your Wedding Day and the rest of your life. ❤️❤️
  • Teresak
    Thank you for sharing
  • renato
    Katie,you are great. Me too,after 3 coronaric by pass i have had thesame troubles you described. (age 69 ) Now i recovered completely; think always you are not alone,from the sky SOMEONE may keep an hand on your head; even if this is not his duty,sometimes HE does it.My english is poor i am italian and i live at Milano. Tomorrow i will be in the San Pietro basilica in Roma. We will pray for you,never surrender Ciao, Renato
  • AHA Ambassador Mark
    AHA Ambassador Mark,
    Katie, I admire your strength and determination as you stay on course to lead a happy and productive life. I had only one heart valve replacement procedure so I can just imagine the challenges of your third operation. Your description of the emotional roller coaster ride following your last surgery hits home with many of us on this site. It's hard to explain the feelings to someone who has not gone through the process because I'm beginning to believe that heart surgery may in fact be different than other surgeries for some yet to be know reason. We can technically fix many heart conditions and defects but the emotional "fix" can sometimes be elusive. You are doing your part to address your condition and start a wonderful and positive new chapter in your life. I wish you nothing but the best as you pursue your "new normal". Take good care. MarkR
  • katie091
    Thank you all very much. It is great to be part of a community of warriors!
  • carolonowens
    thank you Katie for sharing your story. you made me realize, again, how precious life is & not to take any of it for granted. It's great you have come thru your troubled times with the help of your family/friends & of course God. stay strong & enjoy everyday. be happy. I'm sending you good thoughts & prayers. your friend, Carol
  • Kg
    as a nurse with heart disease, i suggest that you reach out to a cardiac support group to listen to other survivors and learn from them . also, i advocate alternative therapies such as treating yourself to monthly massages, learning and practicing meditation, joining a Yoga group or find one on TV for free. After many years as a healthcare provider I find that these other activities do wonders to support your emotional needs and help to control those difficult to deal with feelings like depression, anxiety, and fear. Personally, I have found a short Yoga program that I do in my home each morning before work. I also have started meditating before I sleep with thinking positive thoughts and using an approach of listing what I am grateful for in friends, work, my family, etc. Best wishes to you. k
  • Pood1954
    Thanks for sharing. God bless you
  • Paige
    Thank you so much for sharing your story. You must have a very special place in heaven for all the trails you have endured. The most important fact is that you are alive and here to inspire all of us.
  • knowbetterdobetter
    Blessings to you beloved. Thank you so much for sharing your truth. May you continue to thrive, continue to walk in love, marry your best friend in life and have children Amen! I would agree with K. about the meditation. I recently started taking Yoga at the local KROC center. I have myself more relaxed, thinking better and looking better too! We can't do this thing called life alone, thank you again for sharing. D. Day
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