Monday, January 29, 2007

I was born with Tetralogy of Fallot. I imagine that you may be familiar with this defect or at least may have heard of it. It is the most common cyanotic CHD.

My initial repair was in 1982 when I was 10 months old. I was in the hospital for 11 days. From that point up until I was 12 yrs old was a relatively problem-free period of life. I was able to live a 'normal' life. I played baseball and basketball competitively and played other sports like football at recess.

One day in 6th grade I began to feel very wrong. My heart felt like it was trying to come out of my chest because it was beating so rapid. I couldn't jog or do anything strenuous without feeling faint and lightheaded. I was taken to the hospital and I was quite fearful. Turns out I had developed Atrial Flutter. As you may know, Atrial Flutter is an electric abnormality in the heart's conduction system. To correct this arrythmia, I underwent an ablation procedure. Ablation's are electro-physiological procedures that require the use of catheters threaded up into the heart to disrupt the malformed circuit. This arrythmia can come and go as it pleases (and it sure did). I would continue to experience Atrial Flutter and Atrial Fibrilliation over the next 11 years of my life. I have lost count of how many ablation procedures I have endured. I have also recieved IV fluids to correct the arrythima as well as being defibrillated (not fun). With the advancement in imaging/mapping technology, I underwent my last ablation in Dec. 2004. This procedure was very successful (praise God) and as a result, for the first time in 11 years, I was taken off medications (praise God).

Let me back track a bit. When I was 16 I received news that I would need another open-heart operation to replace my pulmonary valve. Upon hearing the news, I broke down and cried in my mother's arms. My worst nightmare was shaping into reality. I was very frightened and questioned God for a day or two. But, I began talking to my dad about all of it and he helped me to regain focus and reminded me that God was not surprised by me needing another surgery, He is still control. So, in the next couple of months leading up to my surgery, I experienced spiritual growth and maturity like no other period in my life. Knowing that so many people were lifting me up in prayer to the Almighty God just absolutely put a calm upon my heart. As a result, on the day of surgery, I experienced the peace of God. I cannot begin to describe what it was like except to say that I was ready for whatever may come. The surgery was successful and I received someone's heart valve as my own. I was in the hospital for 6 days.

God did not give me a spirit of fear, but of strength and power. I did not want to live in fear so I continued to play the sports I loved in high school. I continued to be active and live life. I am thankful that I did not have to miss any schooling during all of this. I was accepted into the University of Florida to much excitement. However, my freshman year was extremely difficult. I was taken to the ER via ambulance one night while lifting weights at the gym. The ER staff didn't quite know what was wrong so they released me. The very next night I experienced the same 'white vision' and found myself in the ER once again. It wasn't until I was able to see my cardiologists at home that it was discovered that my tricuspid valve was allowing significant leaking or regurgitation. I pretty much knew what was coming and sure enough, my dad told me that I would be needing another open-heart surgery. Instead of crying, I was more confident and prepared. Once again, I grew in my relationship with God in the months prior to the surgery. This 3rd operation's focus would be in repairing my tricuspid valve while also performing a cryo-ablation for potential arrythmia's.

July 2001 I underwent my 3rd open-heart surgery. I experienced Atrial Flutter post-surgery so I was taken back down to the ICU for the remainder of my stay. As it turns out, this would be an incredible blessing. As you know, ICU's are filled with unconscious people as a result of anesthesia or med's. Also, you know that ICU nurses are constantly monitoring and helping their patients. Enter me into the picture, a 19 yr old (in a children's hospital) that is slowly regaining strength and coherence. This meant that I was able to hold conversation. The nurses loved having a patient who could speak! Most of the patients were babies with some elderly patients mixed in. So, most nurses would come into my room just to chat a bit or check up on me. Through this I was able to establish friendships with a few of the nurses. To this day I still visit those nurses that took care of me (which is incredible). One thing I will never forget while I was recovering in the ICU was being able to visit the other heart babies in the ICU. I couldn't help but to picture myself as those babies and feel such compassion. I was able to meet with some parents that were at the bedside of their baby. Seeing their faces move from fear and anxiety to hope as I told them my story was an experience I will never forget. I couldn't help but to envision those people as my parents watching over me at my bedside when I was a baby. It was an amazing blessing.

So, here I am today as a 25 yr. old young man. I still am very active in playing sports (I play in a men's competitive softball league with my brother and father). I still have checkups twice a year. I undergo the usual echo's, stress tests, holter monitors, and EKG's. Who would have thought that I would make it to my teens much less my twenties? I wonder what images and fears flooded my parents minds when they learned their little boy had a CHD.

I will say this, if God had given me a choice to enter this world as a completely normal and healthy boy or as a boy with Tetralogy of Fallot, I would choose to have the Tetralogy of Fallot every single time. My life is a blessing that I wish never to take for granted. Because of my heart, my perspective on life has drastically changed. I cherish each day and try to live from an eternal perspective. Also, my relationship with God without my defected heart would not be the same as it is now. He has matured me and developed me through perseverance in the dark hours and therefore teaching me how to trust Him. Among the so many things I have learned, He has taught me to have the right attitude no matter what. Our attitude determines the choices we make. I could just have easily chosen to deny my heart struggles and become angry with God and the people in my life. But, with His help (and I would not be here without Him) and guidance, He brought me through safely, stronger, and wiser. He has replaced that fear I experienced as a 16 yr old with joy and gratefulness. I am so thankful for my heart defect. I would not be who I am without it.

So, today I move closer to graduating with a master's in biomedical engineering. I still am blown away that I am in graduate school. There are so many heart kids that may never experience college, may never learn how to read nor write, and may never be allowed to drive or play sports. Yet, here I am having been given gifts and abilities that are to be used for others, not for me. So, as I work on my thesis to try and improve patient/family education in pediatric cardiology, I keep those kids in mind. For this degree I pursue is not for me, but for them. I desire to give back for that which was so graciously given to me.




Anonymous said...

Adam, thank you for posting this. It is a comfort as we prepare for our daughter's surgery and an inspiration and guide for us in figuring out how to be the best parents we can be as she grows up.

Makiko said...

Hi Adam, my third son Yoshua who is only 3 month old has been diagnosed with TOF. He is scheduled to have an open heart on July 21st at St Josephs' Children's Hospital in Tampa. Your blog was very encouraging, and we also believe that Yoshua is in God's hand. Thank you for sharing your experience! GOd bless you.

Anonymous said...

Thank you for your encouragement, Adam. I just found out my son has TOF and when I googled TOF blogs, your blog came up second. Good for you for sharing your faith in God and investing back.

kksmom09 said...

Thank you so much for this inspirational message, I am a 21 year old women born with tof and I celebrate my 22nd bday next week as I'm sure you feel I feel proud every year to know god allowed me more time on this earth I am a mother of a two year old and my cardio doc just cleared me and my husband to try for another one. I am very blessed. I remember being 14 or 15 crying thinking I would never be a normal wife, mother, women...but God works in great ways. I just know this is gonna be a good life...

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