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My Story: Transposition CHD, 3x Open Heart Survivor.
This is a big step for me to reach out and share my story. I've always kept my heart condition a secret and never met anyone who has Congenital Heart Conditions, but now is the time in my life when it's going to help others. Hopefully my story is relatable and helps you too!
In 1992, the nurses noticed I came out blue and not crying. Wondering why they quickly did an assessment and saw I was getting no oxygen and only getting darker. They quickly flew me to Boston's Children Hospital where they had to do emergency operation. The Dr who popularized the study of transposition was on call and had the chance to operate on me. Both of my arteries were switched which caused lack of oxygen, and blood to not flow. At just a couple hours old I had intense open-heart surgery and repair my arteries. I was placed in an incubation chamber and a medical coma for over a month.
At 9 months old Dr's found my pulmonary valve was having complications. Leaks, afib, murmur, something wasn't right with it and they had to schedule another open-heart surgery. The Boston's Pediatric Cariology unit performed my second open heart to repair any damages and remove my pulmonary valve. Done correctly, I should lead a normal life, however the mental impairments were done. (More on this later)
Childhood and growing up:
Growing up, I was a happy child. I didn't let my heart stop me from doing karate or wrestling with the other boys. My parents didn't want me to be held back from doing what I wanted. But my transposition CHD did have an effect on my learning. In school, I had signs of ADHD and was very hyperactive. I struggled with speech, and math. I struggled with controlling my emotions, and lacked focus.
In high school, I struggled with standardized testing and math. I must have taken my SAT six times but I was always in the 10th percentile. I loved history, and excelled in language arts. I was fairly active, I would bike 10 miles a day, and engaged in the local Explorers troupe, I had many friends and they knew of my heart but never really brought it up.
In College, I was doing fine. Until everything changed again. The leak in my heart was getting bad and my arteries were narrowing. In the summer of 2014, I had to have a catheter where my Dr was going to simply put in a stint to widen the arteries. I went in with high hopes that my heart would be fixed. When I woke up, the Dr came in and I noticed something was wrong. They couldn't put in the stints because the work of the previous surgeries were too complicated. For the next few months, if I ate any food or lightly exercised my heart rate would skyrocket to 120 or 135. I had to lay down after eating any food. I just had to mentally prep myself for what was to come. It’s not going to stop me, I can handle it. After much mental prep and coming to terms with the situation I was ready.
Third open heart:
Summer 2014 came around and the St. Pete Cardiology unit performed my third open heart. I was finally getting a Bovine valve after 22 years that would act as a pulmonary valve instead of the stints. A simple open heart that would take 2.5-3 hours tops, took about 12-13. I kissed my family goodbye and said a prayer for a smooth operation. Well...this operation turned out to be a disaster. The medical team told my family after 3 hours of surgery that they just finished prepping me. For hours, they kept them waiting on any news. My family was terrified about what aren't they telling them. At about 8-12 hours in, they finally fessed up and told my family that there were "complications" aka his heart isn't restarting. They nicked an artery and had to reopen me. They placed me on a heart machine and pumped 24 units of blood through my heart to keep me alive while they tried to restart. They finally wrapped up surgery and sent me into ICU. I was literally up out of bed two hours later, and released from the hospital in five days. (In 2017, all the St. Pete Heart Surgeons confessed to botched surgeries after investigations of patients dying and resigned from their positions. Records indicated that the surgeons and admins kept the surgery errors in secret. IE - One child found a needle still inside her from that was left from her open-heart surgery.)
Post-Surgery, I had several months of recovery. The first four were the worst. Dr. ordered me to use a breathing trainer and walk a little each day. My chest was very sore and tight. I had to sit up straight when I slept. I was never fully right until about a year later. My surgery set me back two semesters of college. I needed one to recover, and I failed my teaching internship because I lacked skills needed to managed a classroom. This was strange because I never failed a class before.
Mental Health Crisis:
I finally graduated and got a teaching job at a charter school in 2016. The second half of the year was a nightmare. My class was chaos and I had complete sensory overload, mental breakdowns, and manic episodes. I would go home and lay down as my head would just spin and spin. My fiancé, parents, brother, everyone thought it was just me, I needed to do "a better job at teaching", "they are just kids" "try harder". But this had me wondering about myself. I've always suspected I was "normal" mentally but I decided to look into it for the first time in my life. I met with a wonderful psychiatrist who did confirm that CHD patients do have mental health delays. I was diagnosed for the first time in my life. Severe inattentive ADHD, mild symptoms of PTSD, depression and anxiety. Now, it all made sense as to why I was struggling. My second year was wonderful, I loved that class. My third year, I got sick and went to the ER, I quit teaching and have been floating jobs ever since.
Now because of the Pandemic and working home alone I've had so much more time to study CHD and reassess my life. Studies have come out since 2017 about mental health and CHD. Anyone with transposition or any form of CHD has significantly higher odds of having adhd, ptsd, depression, anxiety, math problems, and speech issues. I'm personally letting you know if you have CHD and experienced sensory overload, are forgetful, have a hard time managing stress, can't make up your mind over a job, that it is alright, you're not alone.
Hopefully, my complete story will give insight into your life with CHD and helped you too. I was glad to share and would love to hear from you. Comment, follow, share your story with me, ask me anything.
I am glad to have shared and I am here if you need me.
AHAModerator, June 3, 2021 9:28am EST
Thank you for joining the Support Network and sharing your story. I am glad you feel comfortable and ready to share your story and hope it will inspire others to do the same and reach out for help and guidance. I hope you find a sense of support and a community here as you continue to share your story and any questions you might have.
Please keep us updated on how you are doing!