Monday, June 08, 2009

A special story from Lauren (a 21yr. old Tricuspid Atresia aka HRHS Survivor). Thank you so much for taking the time to write this and share it with us. We are honored to be able to share it with everyone.

I can still recall my first traumatic memory; actually it was my first childhood memory. I was sitting in a big red chair and I had tube coming out of my chest. I was crying and in pain. I did not understand what was going on. I reached out to be held, but I was not picked up and I couldn’t understand this. As I got older I was finally told why I have this memory. I was born with a Congenital Heart Defect called Tricuspid Atresia or Hypoplastic Right Heart Syndrome and I had two open heart surgeries. When I was born my parents and the doctors didn’t know I had a heart defect. I was written off as a healthy baby girl and a welcomed second child. It wasn’t until the first weeks of my life when I became ill that my mom knew something wasn’t right. I couldn’t keep any food down, I wasn’t gaining weight, and I started to get a rash all over my body. My mom kept taking me to the pediatrician week after week and all they ever told her was that I was a mucusy baby and that I would grow out of it. My mom knew in her heart that something was wrong. By the time I reached 11 weeks old I would turn grayish-blue when I cried and my breathing became very labored. My mom rushed me to the ER of the nearest hospital. They did an echo and an x-ray on me only to find out that I was in severe heart failure and that I needed medical attention ASAP. The doctors called for an ambulance to take me down to Children’s Hospital even before they came out to tell my mom what was going on. They told my mom that I was very sick and didn’t know if I was even going to make the ride to the hospital. They also told her that there was no room in the ambulance for her to ride with me. My mom called my dad at work to inform him of the situation and tell him to come down to meet her at the ER before they took me to Children’s Hospital. My parents followed behind the ambulance. In a moments time my parents were thrown into every parents’ worst nightmare.

They waited hours in the ER of Children’s Hospital before they knew what was going on. A cardiologist, the one I still have today, came out to explain the situation: that I was still alive, what I had, and a plan on where they are going to go from there with my care. That first day in the hospital I had my first heart catheterization to rip a hole in my heart so oxygen could get through my body. I went home a few days later in a variety of different medications and a special formula that consisted of concentrated Isomil with polycose added as I needed to be 10 pounds for my first open-heart surgery around 4-6 months of age. My mom tells me it was a grueling task to get me to eat and keep down all my formula. I’m sure it was a long and tough few months for my parents. And if that wasn’t a big enough task to take care of me and make sure I ate and stayed healthy my parents had my older brother to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. I’m not sure how they got through it, it was hard, but they had family members that were willing to help as well. In early December of 1987 I had my first open-heart surgery called the Pulmonary Banding. I was just 4 months old.

My mom tells me that shortly after my first heart surgery I started waking up from sedation and pulled out my breathing tube. I started to struggle to breathe and she was the only one in the room. She rushed out into the hallway and told a nurse. The nurse looked into my room and as soon as she saw me a code blue was called. My cardiologist and my surgeons came running down the hall. My mom said she felt like she was in a movie as it felt like forever for these three men in white coats to get there as she was trying to stay calm. Of course, everything turned out fine. My two surgeons weren’t happy with the PICU nurse who took so long to call a code blue. After a 10 day stay I came home just in time for my first Christmas. I thrived and was a happy baby, but that was short lived as I came down with a bad case of RSV which landed me in the hospital for a 4 day stay. After that scare I came home and continued to thrive and grow. I was happy and loved life. When I was a little over 2 years old it was time to go back to Children’s for my second heart catheterization. All did not go well as I developed a blood clot in my right leg and had to stay in the hospital a few days. Again, I survived and recovered well. My parents didn’t even get to collect their thoughts as less than two months later, in November of 89, I was back at Children’s Hospital for my second and most dangerous open heart surgery. I’m not sure exactly what the mortality rate was but it was pretty high for this type of surgery at the time I had it. The surgery went well, but I did spend exactly a month in the hospital.

After my second heart surgery I lived a pretty “normal” childhood or whatever normal is anyway. I had a few minor medical issues like another eye surgery when I was seven, bad case of chicken pox when I was ten, diagnosed with minor scoliosis when I was 13, but nothing major. Socially I was behind as a kid and went to Kindergarten twice. I was a very shy kid, didn’t have a lot of friends. I actually had a very hard time making friends and I would get teased. It was mostly because I was different. I couldn’t run very fast, couldn’t play any sports, and I had glasses. Kids with glasses can get made fun of in general. I always felt different, but I learned to accept it and I found my way. I was put in bowling as a kid and acting. I loved those things and they got me out of my shy self. By the time I hit high school the teasing stopped, but the not fitting in didn’t. I was never part of any “popular” group and never had a lot of friends and I was ok with that. I played on the girls’ varsity bowling team for three years, was one of the best on it, and earned my varsity jacket.

It wasn’t till my junior of high school where my life changed for me; it was a turning point so to speak. I broke out into hives all over my body for no reason early one morning and I was so scared. I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong. I was in so much pain because the hives were on my joints too and it was hard to move. Finally, after three months of steroids, being off my heart medications, and being watched 24/7 the hives went away and to this day no one has a clue what happened. From then I realized that anything can happen and I was so grateful and blessed for what I have. It was at 17 years old that I found my strong faith in God. I turned to him through prayer for everything. I questioned my life, my CHD, everything, but tried to find peace. Since then life has not been easy for me, but it certainly can be worse and I don’t take a thing for granted. I was diagnosed with Super Ventricular Tachycardia (heart palpitations), when I was 18 and I’m on beta-blockers for that. When I first got the symptoms of the palpitations it was scary for me. I had night sweats, bad chest pain, hard to breath, and harder to do daily activities. I was so scared that I didn’t even tell my parents right away, I know now that I should have and I should ALWAYS tell someone if something isn’t right, but it was hard for me to accept that something was wrong. Since the beta-blockers I have been SO much better, but I still struggle with on and off chest pain. It can get frustrating, but I deal with it the best way I can. I could take more beta-blockers, but from the dose I’m on now plus my other heart medications I already get tired really easily that I just don’t want to risk anything right now.

Last year when I realized that I was getting older and heading into unknown territory for CHDers I took a hard look at my life and what I wanted to do with the time I have. One of those things was to help and bring hope and comfort to the CHD world. I made a promise for the rest of my life to be a part of helping the CHD world in some way. I ended up finding carepages last year by chance and started talking to CHD parents. Since then I’ve also started a blog and got involved in CHD organizations to help spread CHD Awareness. Aside from this I’m a junior in college and I’m majoring in psychology. In my spare time I love to write poems, read, spend time with friends, hang out with my loving boyfriend, and enjoy time with my family. I’m trying to plan for a long future as I have many goals for myself, though it can be mentally hard when statistics are always thrown in your face. My life has had its struggles, but it has had SO many blessings. I believe my CHD has had a huge part of who I am today. It has made me a very understanding, kind, and caring person. Though don’t get me wrong I’m far from perfect, I’m only human. God has blessed me with two amazing and loving parents that I am ever so thankful for. I have two wonderful brothers and I can’t imagine life without them. I have a wonderful family including my grandparents who love to spoil me. I have the most amazing and supportive best friend that I could ask for. I also have the most amazing, supportive, caring, and loving boyfriend I could ever ask for. I look to God and my loved ones for strength as I know my fight with my CHD is far from over. I will have more struggles to come, but I won’t sit and wait for them as I have so much to live for. So I will live, love, and be happy for today is blessed. If I had to sum anything up it would be in this quote that I wrote a while back.

A Quote by Me: "This life I've been given has not in any way been easy, but I would not give up my special heart for anything. It has taught me so many things and has taught others around me as well. I'm on a mission from God and I WILL complete it with no regrets or ever thinking that this heart I was given was a just a horrible mistake. God doesn't make mistakes."

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