Overwhelming. Encouraging. Optimism. Normalcy.
Attending the Adult Congenital Heart Association’s conference in Los Angeles has been an invaluable learning experience. It will take weeks to process all of the information, but here is a brief overview of the things most impacting my life.
“I’m not dead yet!”. Anthony from the Pittsburgh area, ACHA Ambassador keeps a blog & repeatedly makes the point, I’m NOT DEAD yet. I’m not giving up, this chronic disease is not going to kill me yet. Anthony taught me the hope in transplantation. After I receive my new heart and liver, and be one of the 70% who survive the first 6 months, I WILL RUN MARATHONS again. As John Bingham, “the Penguin,” says, “Waddle On!”
“My 24 year old legs have varicose veins, and I’m normal.” one of the patients said. My scars, my varicose veins, my cyanosis (bluish tint) is a reflection of my vascular system. Among my friends at home, this is freakish. Among my friends in the ACHA world, I’m normal. I am NOT a freak.
“Just Do It!”. No, not Nike, but a CHD ( Congenital Heart Disease) therapist taught. Should I go to the party? should I go to the ladies night get together? Should we go on a family vacation this summer? QUIT shoulding all over yourself and JUST DO IT! Life is too short for everybody… Do what you enjoy ( anything safe and legal), spend quality time with family & friends, read to your kids, eat some chocolate. Enjoy EVERY DAY we are given and blessed to have.
“Don’t be afraid of the transplants! You will feel so much better, life will change! Go for it!”. Dave, an super advocate for transplantation told me. 4 months after his heart transplantation, he climbed Utah’s highest mountain. Hs inspirational music and faith and video gives me the kick in the pants to get up everyday and LIVE!