Living with Chronic Heart Failure Social Security Administration Policy Conference

1. Living with Chronic Heart Failure Social Security Administration Policy Conference September 25, 2008 Bob A. Scott Patient

2. Biography • Lifelong resident, Woonsocket, RI • Married with 3 adult children • National Advocacy Chairman, Mended Hearts • Member, American Heart Association Founders Affiliate of Rhode Island Board of Directors • I have chronic heart failure

3. CHF History • February 7, 1998: • 48 years old • Playing volleyball • Experienced first Heart Attack

4. CHF History • Diagnosis: • Heart catheterization • Silent heart attack • Blocked artery • Caused muscle damage to lower chamber of my heart • Resulted in chronic heart failure • Stent inserted

5. CHF History • One Year Later – 1999: • Another heart catheterization • Stents unsuccessful • Required heart bypass surgery • Ejection Fraction after surgery = 27% • 2002: • Irregular heartbeat due to CHF • Implantable defibrillator

6. CHF History • 2006: • Implantable defibrillator replaced • 2007: • Received additional stent • Heart bypass no longer effective • Drug-eluting stent

7. Challenges of Living with CHD Devastating news: My physician says I can no longer work • Daily chest pain • Shortness of breath • I would be talking to someone and fall asleep • Lost all of my strength • Couldn’t put my hands over my head • Hard walking and standing

8. Applying for Social Security Disability Originally applied in 1998 • 48 years old • After first heart attack Disability Denied • Able to do secondary work?

9. Applying for Social Security Disability After Denial of Benefits: • Temporary disability • New career • Big cut in pay and benefits

10. Applying for Social Security Disability Reapplied for Disability: • Age of 50 • Benefits approved • Started receiving Social Security Disability Insurance in January 2000

11. Day to Day Living with CHF Every day can bring a new experience

12. Before CHF Jump out of bed ready to go Take shower in 5 minutes Hop in the car and drive off I was in the service and could stand all day After CHF Sit at edge of bed and let blood flow before getting up slowly Taking a shower is one of my hardest daily chores Once I get to the car and get in, I have to catch my breath before proceeding Standing or sitting too long causes fluid build up Day to Day Living with CHF

13. Before CHF Bend down to pick-up something Sleep flat on my back Loved to sing After CHF When I bend down, I get dizzy if I get back up too fast If I lay on my back I wake up gasping for breath because my lungs build up with fluid I lose my voice if I talk too long Day to Day Living with CHF

14. Before CHF Cut the grass in 20 minutes Play with my dog Paint a room in a day Work around the house Work a full-time job After CHF On a good day, cut the grass in 2 hours Cannot play with my dog Sometimes I can do a small task around the house Tried to work part-time as a golf course ranger, but even riding the cart too long affects me Day to Day Living with CHF

15. In Closing CHF affects every aspect of my life. People with CHF have to take it one day at a time. You do what you can when you can. But most of all: “You can’t judge a book by its cover.”

16. Questions?