Understanding

I didn't truly understand my CHD until about 3 or 4 years ago. That was partly my fault because I didn't really want to know. I didn't ask questions of anyone.In fact I always let my mom or grandmother ask them for me.And yet in other non-medical parts of my life I did ask questions and I was very assertive.Part of it was the fault of my family. They made the mistake by not explaining things to me from an early age in very clear terms. They micromanaged my medical care from the beginning and it wasn't until right before my last surgery that they relinquished control at least somewhat.

I had been in control of taking my medications and keeping an eye on my heart rate from the time I was about 10 or 11. Everything else was things I didn't care to be involved in. That was the mistake I made.I should have been more assertive and done the questioning myself. I remember the last time I was hospitalized for arrhythmias,was the first time I asked a question.I asked my cardiologist and my surgeon (who came to see me for no reason at all) if the arrhythmia could be caused by stress.One doctor said no and the other one said yes absolutely.

I recieved a book in 2008 called It's My Heart which detailed a lot of CHD's and finally I was able to understand mine and why they called it Double Outlet Right Ventricle Tetralogy of Fallot Type. I had always known that in some ways DORV was like ToF,but I never understood how. Now I understand that it's because DORV shares 2 of the 4 ToF defects.

Parents make sure you tell your children early what exactly is wrong with their heart so they understand it earlier than I did.Obviously tailor the explainations to be age appropriate,but nevertheless be honest with them from the beginning.