Living a Normal Life with Congenital Heart Disease:
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- Wilfred Johnson
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1 Living a Normal Life with Congenital Heart Disease: A Patient s Perspective Tom Grady
2 Discussion Summary Quick biography Facts about CHD Summary of my CHD Stories from 5 Grand Openings Athletics: Growing up and today Transition to adult cardiac care Adult Congenital Heart Association (ACHA) Q&A
3 Quick biography Born in St. Louis, MO in 1968 Born with Tetralogy of Fallot (undiscovered at birth) Twin brother and two older brothers born healthy No family history of CHD Saint Louis University (English/Journalism major) Tulane University (M.B.A. Finance/Marketing)
4 Quick biography - today Married 3 children Maddix (8) Patrick (6) Auggie (18 months) Live in Minneapolis President of Palladium Capital Volunteer, ACHA
5 Facts about CHD Heart defects are the most common birth defect 1 in 120 births 3x more common than muscular dystrophy 5x more common than childhood cancer 30x more common than cystic fibrosis 35 defects Simple Moderate severity Great complexity
6 Facts about CHD For the first time ever, there are more adults than children living with congenital heart defects in U.S. 1 million adults 800,000 children
7 Summary of my CHD Tetralogy of Fallot (TOF) Four defects: Ventricular Septal Defect (hole between ventricles) Pulmonary Stenosis (narrowing of valve) Right Ventricular Hypertrophy (wall thickening) Overriding Aorta (AV too close to Right Vent.)
8 Summary of my congenital heart defect Tetralogy of Fallot (TOF) First identified in 1888 by Dr. Etienne Fallot 1 in 1,500 babies are born with TOF 10% of all CHDs are TOF
9 Stories from 5 Grand Openings First open heart surgery at 3 months: Blue as the sky in a bathtub Flatlined during catheterization Creative plumbing saves the day (temporarily) Take him home to die
10 Stories from 5 Grand Openings Second open heart surgery: 6 years old First of many corrections He s fixed (or so they thought back then) Go home and live a normal life 1975 Missouri Heart Fund Child Lots and lots of unwanted attention
11 1975 Heart Fund Child
12 1975 Heart Fund Child The Money Shot
13 Stories from 5 Grand Openings Third open heart surgery: 18 years old Falling asleep after school Pediatric cardiologist dies New cardiologist asks to check me over just in case Only kid shaving on my floor Fixed again! go live a normal life Start of college delayed a semester
14 Stories from 5 Grand Openings Fourth open heart surgery: 23 years old Living in New Orleans No specialty care or congenital experts in town Training for first 10k routine EKG shows issues Cardiologist has never seen anyone like me before Family friend recommends NOLA native at UCLA Finally, someone who knows what I have!! Four month insurance battle begins
15 Stories from 5 Grand Openings Fifth open heart surgery: 38 years old Pig valve has to be replaced First surgery as a parent Same surgeon as 1993 No insurance issues this time Four day hospital stay
16 Athletics: Growing up and today Doing what most 40 year olds do: golf, tennis, squash, racquetball Running has become a great activity Doctor approved (treadmill stress test/echo) Two half marathons One 10 mile race A dozen 5k and 10k races
17 Medtronic Global Hero
18 Medtronic Global Hero
19 Exercise More than 90% of adults living with heart defects have no or only mild limitations Ask your cardiologist Get specific information about the risks Research suggests exercise key for all hearts For some, exercise is a prescription
20 Transition to adult cardiac care CHD means lifelong management and care Things change with time; new issues arise Need to be under care of trained CHD specialists The number of specialists in adult CHD is growing Our population is living longer a new demographic
21 Adult Congenital Heart Association (ACHA) The Adult Congenital Heart Association (ACHA) is a non-profit organization which seeks to improve the quality of life and extend the lives of congenital heart defect survivors. Through education, outreach, advocacy and promotion of research, ACHA serves and supports the more than 1.8 million individuals with congenital heart defects, their families and the medical community.
22 ACHA National clinic directory Message boards Annual conferences Newsletter Support networks Medical and insurance reference information
23 Adult Congenital Heart Association (ACHA)
24 Final thoughts Everyone has challenges in life we are no different With adversity comes resilience, empathy, perspective Parents have to walk a fine line: Be attentive, careful and honest with your child But let them be kids They want to be treated like everyone else Your #1 Goal: Make them responsible for their care
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