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StephanieJS, May 21,  2020  3:39pm EST

Just Saying Hello!

Hello Everyone!  I am new here and I just wanted to introduce myself.  My name is Stephanie and I am a 33 year old CHD Survivor.  I was born with Tetralogy of Fallot in 1987 and had my corrective repair in 1990.  I was fairly asymptomatic throughout adolescence and my condition wasn't necessarily a concern to me.   Early into adulthood, my cardiologist had noticed that my pulmonary function was deteriorating and I received a bioprosthetic pulmonary valve at the age of 21.  In 2011 my pacemaker/defibrillator was implanted.  This device allowed me to safely carry and give birth to my son, who is now six.

My only limitation growing up was contact sports, but I was never the athletic type, so that really didn't affect me.  When I was told I would need a new pulmonary valve, I was floored.  At the time, my energy had been low but I was also working full-time and carrying a full college course load.  I assumed I was just overworked.  Once my PVR was replaced I was amazed at how much energy I had!  I've always enjoyed hiking and the first thing I did was fly to the Midwest and hike throughout the major National Parks.  It was at this point that I really began to focus on my physical health.  I began running- SLOWLY- and became amazed at what my body was capable of.  With my family, I entered mud runs, 5ks, 10ks, and of course continued to hike.  

My husband and I married in 2011 and a few months later I began having dizzy and fainting spells.  Through the use of a holter monitor, it was discovered my heart was racing at random times.  My cardiologist explained that this is a common response to previous treatments for TOF and recommended I have a AICD (pacemaker/defibrillator combo).  It was probably the first time I remember feeling frustrated about my heart condition and what it could possibly mean for my future. Months after, we asked about the risks involved in carrying a child.  My cardiologist gave us a very cautious green light and I was closely monitored by him and a local high risk OB office.  Being a mother was always my dream and the fact that it was now a realtiy had me elated.  I loved pregnancy and did incredibly well through most of it.  Labor and delivery was very bumpy, cardiac wise, and due to this, we have decided to keep us a happy family of three.  

SO!  That is my story in a long winded nutshell.  I am looking forward to getting to know the members of this community and reading your heart stories!  

2 Replies
  • AlyAHA
    AlyAHA, May 21,  2020  6:47pm EST

    Hi Stephanie! Thanks for sharing your story and helping generate conversations on the Support Network! We are very lucky to have you!

  • JamesPL
    JamesPL, May 24,  2020  9:44am EST

    Hi Stephanie,

    I enjoyed reading your story and am so glad for the positives you've had in your life while living with your heart condition. Having a child is probably the greatest of those positives. We are fortunate to be in a world that has given us newer and better treatments for heart disease allowing us to achieve the dreams we all wish for. I was diagnosed in 2011 with heart disease and like yourself I have always enjoyed running. I have competed in many races varying from 5Ks to half marathons. I continue to emphasize exercise today and and believe it is a major reason for my successful recovery. For as long as you can, keep at it!

    I wish you continued success and happiness!


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