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Spedrox, June 8,  2021  1:03pm EST

Tetrology of Fallot

Hey gang, I was born on January 1, 1974. At first the only issue was a tracheo-esophageal fistula. Then at about 6 months of age, the GI specialist noticed a blue/purple-ish hue under my nails. He then asked that my mother see a cardiologist. "What now!?" she thought as the FINE staff at the Children's Hospital of the King's Daughters in Norfolk, VA had me under their wing. At 6 months a diagnosis of Tetrology of Fallot was the latest diagnosis. That was band-aided with a Blaylock-Taussig and a Waterson-Cooley shunts at 6 months and 3 years of age. At 12 years old in 1986, I had my first open heart surgery to correct the TOF. Countless catherizations, check-ups, Halter monitors, stress tests ensued throughout my teens and early 20's. Needless to say this took a HUGE toll on me emotionally. I always felt like half a man. I was always comparing decent, non-scarred, symmetrical bodies to mine. My heart condition was a HUGE source of shame for me. Hearing others complain about things just made me wonder, "man, I wish that was all I had to worry about." I tried to hide it as best as I could. Dressing out for gym was a real treat, I'm obviously being sarcastic. I got into skateboarding to take my mind off of things. It helped and made me feel "normal" being around those with an anti-social role to them. I found marijuana at 19 and that helped the mind a tad but still the shame and desire to just be, "normal," was something I just couldn't shake! At one point I'd contemplated suicide just becuase the one thing I wanted, I knew I'd never get. Oddly though I persevered albeit suffering in silence. Fortunately, people were really my drug of choice so being around friends or in a social environment always took my mind off of my own issues. Then at 23 after committing full-time to college some mysterious "thing," happened to me. I, still to this day cannot explain from where it came but as I sat at my dorm room desk studying for a Spanish exam I felt, well, a feeling. I harken it to the effects of marijuana, despite the fact that I was stone cold sober. What I mean is that I literally felt different, I felt a force, if you will. The "feeling," only lasted about 45 secs to a minute in duration. I did not see anything nor hear any auditory hallucinations but I DID feel something. What's even more mysterious is that at that exact moment EVERYTHING in my mindset changed. The self-hatred I'd been carrying around while not 100% gone was taken away for the most part. I started caring about my health and even started workign out and really pushing myself physically (within my capabilities of course). I started making my doctor appointments and taking a concern in my medical regiment. My meds were no longer viewed as just another thing that made me different. That force gave me acceptance. Now I still do have my struggles. My anxiety is REALLY hightened entering into relationships because I still fear being physically judged, but as I've aged, I see that character is more important to most than chisled looks. Two years ago, unfortunately, I had a bout of endocarditis and had to go under the knife again. While not the most fun thing to go through in your mid 40's it wasn't so bad. The worst was the fact that my body was retaining so much fluid that it started collecting on my lungs. They were able to control it through meds thankfully and once the water was purged I made a full recovery. I've recently had to let go of my weekned alcohol drinks because they were GREATLY increasing the abdominal bloating that so many with CHF have as symptom due to the reduced blood flow. But, I will say that whatever that "force," was or its origination has fixed my head to prepare for and accept what I still deal with to this day. I'll leave out the religious details but needless to say that phenomena did cause me to develop a personal relationship with my beliefs. And, I've noticed that a life of perserverance due to having a MAJOR heart condition has led life to be a LOT easier to manage when huge stress factors come my way, because, hey, I've already been through a LOT worse!! I guess what I mean with all this is that some that have undergone medical trauma may have unmet mental health needs as well. Fortunately mine were, for the most part resolved, however, I implore all those suffering with any type of anxiety, depression, or anger, to please reach out to a therapist, trusted friend, someone on here, and TALK about it!! Blessings to you all!! Nice to meet you!

1 Reply
  • AHAModerator
    AHAModerator, June 8,  2021  5:27pm EST

    Hello there, 

    Thank you for joining the Support Network and sharing your journey and experience. We are glad you are here and have the strength to share your story. I am sorry you went through this but glad you are doing well and are taking charge of your journey. We hope you find a sense of community and support here. 

    Please keep us updated on how you are doing!


    AHA Moderator 

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