My name is Julie Ann and I am 29 years old. I am a daughter, sister, and a friend. I graduated from high school in 2001 and in 2003 I completed and received my degree in dental assisting. In 2005 I completed and received two Associate Degrees and most recently, December 2011, I graduated and received my Bachelors Degree in Psychology. I currently work as a dental assistant at my dad’s dental practice and I am also a part-time nanny for a single parent family. I enjoy sleeping as well as reading great books, doing outside activities, a good workout at the gym, being in the mountains hiking and camping. I also enjoy quality time with my family and friends.
I am also a warrior and a survivor. I was born with a congenital heart defect, which was diagnosed at three months of age, and have had three open-heart surgeries with numerous other minor surgical procedures within the years. I was born with a single ventricle, HRHS (hypoplastic right heart syndrome), which means that I am missing my right ventricle or that it was underdeveloped, and numerous other anomalies. My second open-heart surgery was when I was three years old and my last, and hope to be final, open-heart surgery was when I was eight years old.
My entire family all played their roles in helping me get my strength back after each of my surgeries. My parents raised me to be the active young child not afraid of anything in life. Sure they had their doubts on whether or not I can physically do something, but they always allowed me to try and most times they watched me succeed. I succeed in many things and even have done more than anyone had ever imagined I could do. Through all my struggles I gained fear of needles and endless visits to the doctor. As the years went by my parents and doctors taught me about my health. I now understand why I was constantly tired, screaming and crying when I was just at the normal routine checkup visit with the cardiologist. Today, I embrace them knowing that I am still alive considering what I have been through and blessed with.
Throughout the years I opened up about my health so I can share my story for another family going through the same thing. I love going into the cardiologists office and giving all the other parents hope for their children. My parents never had much hope for me and never knew about the future of my health. Today, technology has advanced and there is that hope for babies born with a heart condition. When a stranger asks me about my scar on my chest I set my fear aside and embrace it and share my story. I don’t like to say I’m a survivor but I am. This condition doesn’t heal by itself and doesn’t go away over night, it stays with me every day and I have learned to embrace it. I believe that we are all given a hand of cards when we are born. I believe I was given the dealt of cards I was given to show strength, courage, and hope for my family as well as others. Going through medical procedures is hard emotionally and physically but I am strong not only for myself but for my family as well. My family also has their way of dealing with my medical condition, whether is to show me that I am a strong person and they are there supporting me and helping me through all the obstacles.
Since I found out about my late uncle’s health I have always believed that I am living life for him as well as myself. My late uncle was diagnosed with Teteralogy of Fallot at a young age and he lost his battle at only six years of age. His diagnoses and death affected my father and his family and they continue to keep his memory alive. When I was born, I was told that we looked similar and that my diagnoses could be similar to his. My dad did not remember what his brother’s symptoms were, but since he has some medical knowledge he knew that something was just not right with my health. Also having an older sister five years of age, at the time of my birth, my parents realized that something was wrong since my older sister did not show any symptoms, at my age, that I was showing then.
My story doesn’t end here. My story continues each day and at beach doctors visits. There is a greater hope of survival into my late adulthood since technology is rapidly advancing. There is even hope of one day achieving my dream of becoming a mother naturally. Throughout all the years I have been able to reflect on my life, my struggles, and my health. One thing that will never change is that I am human and have feelings. I am thankful for each day that I am given to be sharing with my family and friends. I always say I may have half a heart, but my heart is full of love for life. I am thankful for all opportunities to be able to share my story and struggles with. ~Julie
Julie's E-mail: Jewles702@gmail.com
I was born December 29th,1985 at 2:35 am. I was born by C-section at 42 weeks gestation I was prenatally diagnosed with hydrocephalus and it wasn’t until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSD’s and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding done. I was hospitalized for a month after that. At six months old I had the Blalock-Taussing shunt put in and I was hospitalized for 2 weeks following that surgery.
So by the age of 2 I was seeing a new cardiologist in Sacramento. He was kind and patient and dealt with the incessant questioning by my grandmother. In more recent times it was a joke in our family that Dr. Juris was scared of my grandmother. My mother allowed my grandmother to ask most of the questions when the three of us went to the appointments.
When I was four, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn’t clear what options the surgeons down at UCLA would go for. So in June of 1990 we drove down to UCLA with my grandmother’s husband and my uncle.I had a cath done to check the pressures and so that the surgeon who would be operating on me had an idea of my cardiac anatomy. After the cath my family had a meeting with Dr. Hilel Laks who was to be my surgeon. Dr. Laks was torn between the Fontan and a new experimental surgery that he thought I would be a good candidate for.
So we were sent back home so that he could do his research now that he had an idea of what my cardiac anatomy looked like. In Early August we went back down to UCLA where Dr. Laks told us that he thought I would be a perfect candidate for the experimental surgery he wanted to do. Apparently I was his ginuea pig.
My Double Outlet Right Ventricle repair surgery took 10 hours. The recovery from this surgery was rough and I coded twice during the 3 week long hospital stay. But finally the day came to leave the hospital and go back home.
The kitten was a gift from my grandmother’s husband after my surgery at 4 ½.
When I was six, I was kicked out of the special education class I was in. My teachers said that I was too bright and that staying in this program would severely limit me. The goals that were set for me at IEP meetings were being frequently met and exceeded.
When I was eight years old I caught pneumonia in February and I missed 2 months of school. Thankfully I was able to remain at home with no hospital visits. Two years later when I was 10 years old I caught pneumonia again. This time I was home for a moth.
About six months later I went in to see my cardiologist and he ordered a cath. After the cath he told my mother that I needed an aortic valve replacement. My mother told him no and that I was doing too well for her to put me through that. My mom lived in denial until I was 12. Then it was almost too late.
Winter break during sixth grade was hard. I was filling up with fluid. I was coughing a dry cough and dry heaving. I was also sleeping on 6+ pillows because I couldn’t breathe. I was also sleeping in a strange fashion. I would sit Indian-Style and then lean over with my hands tucked under me. I knew it was heart related but no one else seemed ready to believe that. I underwent test after test to see if anyone could figure out what was going on. There were doctors considering a GI issue so I was hospitalized for that. Tons of bloodwork was also done.
It wasn’t until the beginning of February that I voiced my thought to my grandmother. We were walking the halls. I was in my wheelchair with my grandmother pushing me. I said “What if it’s my heart?” My grandmother immediately said “It’s not your heart” On February 5th, I proved I was right.
I was drinking fries and a chocolate milkshake when I aspirated. The last thing I remember is doctors shouting orders. They were demanding drugs. I was on the vent for a week before the surgeon came to my family and said that I needed an Aortic valve replacement on that day or I was going to die.
That afternoon I was rolled into the OR. 12 hours later I came off of the OR table. I was in no means out of the woods yet, but I was stable.
I continued to have problems. My sats were so unstable that I couldn’t be moved without my sats taking a significant nosedive. As a result of that I developed a Stage 4 bedsore on my tailbone that will never fully heal. I was on the ventilator for a month and the first solid food I ate when I was finally off the vent was green grapes. I don’t think green grapes had ever tasted that good.
2 weeks later, on March 19th I was discharged. I could not return to school until seventh grade but thanks to the kindness of my teachers, as well as my grandmother’s tutoring I was not held back.
When I was sixteen I began dating an old friend of mine. It was a whirlwind romance and he proposed after 2 months together. A week after he proposed, I called it off knowing that I was no where near ready for marriage. We dated for a little bit after that but then we called it quits. We still remain good friends to this day.
In June 2005 I was told by Dr. Juris that I would need a second Aortic Valve replacement. I was heartbroken as I was told when I was 12 that the first replacement should last 10-15 years. However I was starting to experience symptoms that were indicative of heart failure. Dr. Juris wanted to do this at that point because my right ventricular function was still really good.
June 13th,2005 I had my heart cath. Because I was second case I had to stay overnight at the hospital. In the weeks that followed it was decided that we would go with a mechanical valve this time because the valve life was 25-30 years. The only drawback was Coumadin and the frequent blood draws that I would need. I decided it was worth it to avoid surgery for a long time.
They attempted a Cardiac MRI during the month of June as well but I freaked out. They had had to adjust the leads on my chest several times and then push me in and out of that tiny tube multiple times. I informed the techs that I was going to throw up. They got me out of there and then I sat up and the room seemed to swim. I was a hysterical mess. I was crying and begging them not to make me go back in that tube. Even after a Valium I flat out refused to go back in. The next day I had a Cardiac CT and the only issue there was the techs wouldn’t listen to me when I told them where to put the IV in for the contrast dye to be administered. This resulted in nearly 30 minutes of sticking me. Finally the radiologist himself had to stick me himself and he got me on the first try.
Monday July 11th,2005 I arrived at the hospital at 5:30am and by 6:30am I was ready and waiting to get going. Of course I didn’t get moving until 8:00am. I don’t remember rolling down the hallway to the OR at all. The next thing I remember it’s Wednesday and they are pulling chest tubes. I didn’t get the second tube removed until Saturday along with the urine catheter. The following Tuesday, just 8 days after surgery I was released. It was my shortest hospitalization following surgery and I would have been out sooner but some old arrhythmia issues had resurfaced. It took me several months to get my energy back but I finally got it and I felt better than I had in a long time.
It took me a long time to figure out what I want to do with my life but just recently I have come to the realization that I want to teach preschool. I am very close to that goal already and I look forward to being able to make a difference in a child’s life and in the lives of their families.
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