Mark
 A little back ground... I was born in 1963 in Indiana, the first of identical twins. When I was born I was very blue (my brother is normal). The docs thought I had Tetralogy of Fallot but were not sure, and a cath was done. I guess they debated the situation for 7 months while my condition slowly but steadily declined . They did exploratory surgery at 7 months (echo had not been developed yet) and discovered that I had Complete Transposition. I guess because of the complex defect and the position of my heart and other factors they were unable to determine this with the cath.
The doctors considered doing an aorto-pulmonary shunt for better mixing of blood, but that was abandoned because of hemorrhaging. At 17 months , the surgeon created an ASD to improve blood mixing which greatly improved my situation.
In 1965, because of me (and the fact that dad hates snow), my dad got transferred to the Los Angeles, California area. My parents knew that someday I would need further surgery, and wanted to live near one of the best cardiac centers.
In 1972, I contracted Meningitis twice and spent 2 months at a Children's Hospital near to where we lived. After 8 spinal taps ,1 coma, and a lot of antibiotics ,I was well enough to go home.
In 1977, my situation had come to the point where something needed to be done. My exercise tolerance had declined and the docs felt I was ready for the Mustard procedure. I had a pre-surgical cath a few months before the surgery. Everything went well (well, I did use 8 units of blood 'cause I wouldn't stop leaking) and after 3 days I was out of the ICU and onto the floor. I spent about 2 weeks on the floor before I was allowed to go home. You have to remember, this is 1977, and they didn't do the "in and out surgeries" like nowadays.
Since that time I have done fairly well. In 1987, I developed arrhythmias and over the last few years have had some tough times. I have been placed on medication and currently my arrhythmias are under fairly good control. I have been active and have always tried to stay up with my twin. Even though he did not have a heart problem and leads a different lifestyle (very active), we are very close.
My parents are the BEST!!! parents I could ever hope to have. They have been and continue to be there whenever I need someone. I also have an older brother but he is kind of clueless when it comes to all this cardiac stuff. Nonetheless, we are a close family and I can warmly say that they have always been there for me.
I am currently in school studying Echocardiography. In addition to my studies, I volunteer as a camp counselor for CHD children. I have also counseled parents with CHD kids and the kids themselves. I feel that these kids are VERY special and hope to become involved primarily in pediatric echo. As someone who has been there, I feel that I can add something special to the job.
To all you parents, children, and adults with CHD out there, keep faith. I know the road ahead can get quite rough, but if you keep faith and a sense of humor , then you will do fine. Sometimes people ask me if I wish it was my brother instead of me who has the heart defect. I always say "NO". Because of all that I have been through, I feel that it has made me a better person. I feel that I know what the "important" things in life are: family, humanity, caring, sharing, etc. Things like money, power, glory, etc. just don't seem to be all that important when you think about it.
Mark E.
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