Monday, February 13, 2012

Connected By Heart ~ Day 4 ~ HOPE

Connected By Heart


Despite all the sadness and heartache in
the Congenital Heart Defect world...
their is HOPE...

-Over 50% of CHDers in the world today are Adults!!
-There is OVER 1 Million CHD Adults alive today
in the United States Alone!!
-About 80-85% of CHDers make it to Adulthood!!

So there is HOPE!!
I myself, as you know, am a adult single
ventricle CHDer... and proud of it!!

I made a Hope post last year around
this time... you can read it here:

Us CHD Adults CAN LIVE pretty "Semi-Normal",
fulfilling, Happy lives!!

Hope = is a virtue defined as the desire and search for
good...difficult, but NOT impossible to attain

My parents always told me to not
let my "half a heart" CHD define me...
The always wanted me to DANCE (LIVE)
every chance I could in life since I was given the
chance to be able to grow up...
So to all the CHDers, young and old:
No matter how long you are here...
DANCE when you get the chance!!!

***Here are 4 stories of HOPE!!...

Cissy's Story:

I was diagnosed with Tricuspid Atresia when I was three months old and had my first open heart surgery very soon after. Tricuspid Atresia is a type of congenital heart disease in which the tricuspid heart valve is missing or abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle. I'm not sure exactly what when on during that first surgery. I believe there was a vein taken from my right arm and put somewhere in my heart. Now you can't get a blood pressure reading from my right arm.

Years went by and all the time I was waiting to have my second surgery. Have you ever heard that saying.. When you’re young you think you’re going to live forever? Well I think that is a luxury kids with CHD never have. As a child I was always sick. Almost any kind of physical activity made me have arrhythmias and then I would always throw up. Just walking to the playground at my elementary school was hard on me. I hated PE because there was no way I could keep up with the other kids and if I even tried I would get sick. When I was seven I went in for my second open heart surgery. The fontan which if you don't know is a palliative surgical procedure used in children with complex congenital heart defects. It involves diverting the venous blood from the right atrium to the pulmonary arteries without passing through the morphologic pulmonary ventricle. I'm not really clear about what all that means myself but it was done to me and to my care bear. He was all bandaged up too when we came out of surgery. Even after this surgery I still could never keep up with the other kids and became sick very easily. I wish people would have been more educated about my heart condition back then so that school would have been easier for me. Even through middle school and high school I had a hard time keeping up with other kids my own age. I did eventually drop out of high school, but I think if there had been some exceptions made for me it would have been easier for me to try and finish.

The older I got the more I learned to do what I could and to take my time doing things. I worked full time at a retail store until I was around 25. I had started feeling really bad so I went to the doctor and found out my heart had become enlarged and I was going to have to have another open heart surgery. My first thought was just not to do it. I really thought I could be content with just living until I died which the doctor said would be about a year form then if I didn't have the surgery. I know how crazy this must sound but all my memories from being in the hospital before were bad and I didn’t want to go through that again. With very much love and support from my friends and family I did have the surgery in June of 2002.
After the surgery my doctor said that my heart had become as big as a basketball so they'd had to cut some of it out and do some reconstructing to it and I had a maze procedure done. In maze heart surgery, a heart surgeon creates multiple cuts into the upper part of your heart (atria) in an intricate pattern, or maze. Your surgeon then stitches the incisions together to produce scars. Because the scars do not carry electrical signals, they interfere with stray electrical impulses that cause atrial fibrillation. This restores your heart's regular, coordinated heartbeat. I had a hard time recovering from this surgery. I was in the hospital for almost two weeks. After coming home it took me a long time to recover in general. I did not go back to my full time job, I didn’t physically feel like I could handle it anymore.

I was okay for a while after this surgery but then I got really sick in March of 2003. My stomach got really huge and I couldn't get out of the bed some days. So again I went to the doctor, and if you don't know I've had the same cardiologist since I was three months old . We've been through a lot together and kind of have a love hate relationship. I think because I'm not a good patient. I always want to do what I want to do not always what she thinks I should do. I do trust her with my life and she is usually right, but this time in the hospital she didn't know what was wrong with me. So I was admitted and stayed for a week while they ran tests on me, and I've had so many catheterizations that they can't go through my legs anymore due to scar tissue. They have to go through my neck which really hurts if they don't knock you out all the way.. After a week they decided I was in heart failure and that all the fluid from my heart was just kind of sitting at my stomach instead of going to my ankles like most people. I was sent home and told to live like a slug until I could come back the next week and have my pacemaker implanted. So on April 3, 2003 I got my first pacemaker. I have to say I love my pacemaker. I can’t remember the last time I really got sick from doing physical activity, I wish I had a pacemaker my whole life.

In May of 2004 totally against the advice of every doctor at Duke I gave birth to my son. The doctors only gave me a fifty percent chance of survival during childbirth. They didn’t know how my heart would react to pregnancy. I had a hard pregnancy and was on bed rest for most of it. I had to go to Duke every week for blood work and an echo sound. My cervix became incompetent and my doctors would do nothing to stop the baby from coming because they felt my body knew I couldn’t handle the pregnancy and was trying to get rid of the baby on its own. I had my baby when he was just 24 weeks along, he weighed 1 pd. 11ozs. He is seven now and doing very good. Since then I've had my pacemaker changed once, in October of 2010.

I pray every day that my health will continue to be stable and I will get the chance to see my son grow up.

Yasmin's Story:

Hey There. My name is Yasmin and I am 26 yrs old, and I was born with a heart condition called Tetrology of Fallot. I have had two open heart surgeries and I had my first one at the age of three and my second at the age of twenty.

When I was born, my parents were wondering why I wasn't a pink baby! I was a "blue baby" and I stayed blue for a very long time. My Drs ran all the tests such as X-rays, ECHOs, EKGs, and CT scans; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had VSD (Ventrical Septal Defect also known as pinhole) and ToF (Tetralogy of Fallot).

I was closely monitored while growing up and I was fine until the pinhole in my heart didn't close on its own and the Drs had to surgically close it. My first surgery was at Children's Hospital in Los Angeles in 1988 and the Drs closed my small VSD (ventrical septal defect) and they put a homeopathic conduit it to connect the left and right side. I was told that because I was growing that the child's size wouldn't fit and this is why the Drs put an adult conduit in. On a return visit for a check-up I got the petal stuck on the sink (they had the ones where you stepped on the petal and washed your hands), and so they moved us to a new room. In the second room I was playing on the bed and my Dr had his hand on my head so that I wouldn't bump it. The bed had a storage area under it. I was doing great, and the Drs said " I would have to have a second one at the age of thirteen" but I didn't need it then because I was growing perfectly.

By the time I was twenty I was already showing signs of needing another open heart surgery, and the reason that my Dr and my parents came to that conclusion was because I was pale and my blood pressure rose (it was 300/91, or 200/90). I was 20 years old and on blood pressure meds. In November of 2005 I went in for my second open heart surgery where they replaced my conduit and they also put a metal stent in. They used the stent to widen my arteries that were small and narrow and they also replaced my pulmonary valve. This was performed at UCLA (University California Los Angeles) by my surgeon, Dr. Hilal Laks who did a wonderful job. However, during my second surgery I had a few complications: like my heart was sticking to the sack that holds it in place so it doesnt hit the ribs, and that was bloody. Then a few days before I was supposed to be released my white blood cell count flew through the roof. I then somehow had gotten an infection and my left lung filled with fluid and collapsed. The Drs drained it and I was released November 25, 2005. a.k.a Thanksgiving Day.

I am currently doing great health and spirits.
I have just married my soulmate on July 10, 2010 and living life one step at a time.
I found my heart as a blessing, and it has taught me compassion, love, and wisdom.

Julie's Story:

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.

Being a Psychology major I had to study about health, depression, labels, as well as many other psychology topics. I have never been too open about my health up until recently. My family and extended family always loved me and supported me when I dealt with medical issues. My friends at school always have known about my scar and knew something was wrong with my heart but they don’t know the extent of my condition. Opening up has always been hard on me emotionally and physically. I was afraid by opening up that I was just putting a label on myself, which I did not want. I had the option of receiving special education services all throughout my schooling but my parents always had denied it. In elementary and middle school I had tutors but they were outside of the school so my peers never knew about my additional help.

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:

Alexia's Story:

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.

When I was eighteen months old, circumstances changed as did my living situation. I now was in an area that had access to better medical care. I was now seeing a cardiologist in San Francisco named Dr. Stanger. Shortly after I began seeing him, he told my mom and grandmother that there was a pediatric cardiologist in Sacramento and that I should be seen by him because it was much closer and much easier than making the 2 ½ drive to San Francisco every six months.

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.

Also this time my mother attempted to admit me to the hospital. My mother took me to the registration desk at the hospital and told the lady behind the desk that she (my mother) was admitting me. At this time my cardiologist, Dr. Juris happened to walk by. He asked my mother what she was doing and my mother told him that she was admitting me. He told her that she cannot admit her own child. He listened to my lungs and my heart right there in the middle of the hospital lobby. He told my mother that I had pneumonia and that he would call in some meds for me.

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.

**NEVER loose HOPE!!

1 in 100 are born with a
Congenital Heart Defect!!
Be Aware!!**

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